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Practical Guide to Clinical Ethics Support

Section A: clinical ethics support

Introduction

What is clinical ethics support?

Clinical ethics support describes the provision of advice and support on ethical issues arising from clinical practice and patient care within a health care organisation. Initially models of clinical ethics support focused on provision of advice to health professionals working in hospitals, usually through a hospital ethics committee or an individual ethicist. More recently models of clinical ethics support have developed to include support for other groups within the organisation, specifically patients and managers, and to provide support across institutions, for example, area-wide ethics committees supporting primary and secondary care trusts. The most common model of clinical ethics support in the UK is an ethics committee or group. These committees are distinct from research ethics committees (see page A4). As of September 2004, 68 clinical ethics committees (CECs) had registered with the UK Clinical Ethics Network.

55 CECs in Acute and Community Trusts (out of 161 Trusts)
2 CECs in Primary Care Trusts (out of 303 Primary Care Trusts)
6 CECs in Mental Health Trusts (out of 83 Mental Health Trusts)
1 CEC in a Scottish Health Board (out of 3 Scottish Health Boards)
1 CEC in Northern Ireland (out of 39 Hospitals)
2 CECs in Private Hospitals
1 area wide CEC in England

Why do we need clinical ethics support?

There is an increasing awareness among health professionals and the wider public of the importance of ethical issues in health care. In 2001 a study of the provision of clinical ethics support in the UK 1 found that there was a perceived need for advice on ethical issues among senior health professionals and health service managers. An increasing number of legal cases, and two public enquiries (into the conduct of heart surgeons in Bristol and into the retention of organs during post mortem examinations in Alder Hey) have highlighted the importance of ethical considerations in clinical practice, and there is now an expectation that health professionals are openly accountable for their decisions, including the ethical aspects of those decisions.

This section of the Manual covers the following areas:

  • Development of clinical ethics support internationally.
  • Development of clinical ethics support In the UK.
  • The difference between clinical ethics committees and research ethics committees.
  • Functions and scope of clinical ethics committees.
  • Different models of clinical ethics support, their strengths and weaknesses.
  • A step-by-step guide to setting up a clinical ethics committee.

International development of clinical ethics support

The North American experience

  • Clinical Ethics Committees and Hospital Ethics committees have been in existence in hospitals in North America since the 1970s.
  • There are a variety of models of clinical ethics support.
  • Ethics support may be required by regulation or legislation.

Clinical Ethics Committees (CECs) are also known as hospital or health care ethics committees (HECs) in North America. They have been in existence since the early 1970s, much earlier than the European equivalent.

In addition to an ethics committee, many North American hospitals also have formally trained ethicists. Ethics support may be provided by the ethicist, by an ethics team or by the full committee.

In North America it is a requirement for hospital accreditation that the institution has a mechanism for addressing ethical issues arising from patient care. Both the Joint Commission on Accreditation of Health Care in the US, and the Canadian Council on Hospital Accreditation suggest the establishment of a multi-disciplinary ethics committee to meet this requirement. 2, 3 In some US states, for example Maryland, hospitals are required by law to have an ethics committee.

A first hand account of the experience of ethics support in the United States is provided in Appendix A1.

The European experience

  • CECs have been in existence since the 1980s in the Netherlands.
  • Many countries have committees combining research and clinical ethics.
  • Regulation requiring clinical ethics support varies from country to country.

Clinical ethics support has developed more slowly in Europe in comparison with North America. Clinical ethics committees have been in existence since the 1980s in the Netherlands, including ethics committees in nursing homes, but there are still many European countries with no formally recognised ethics support. Some countries have legislation regarding ethics support, for example in Belgium it is a legal requirement that every hospital should have an ethics committee that addresses research and clinical issues. 4 The Norwegian parliament has recommended that all hospitals have a clinical ethics committee and it has funded a national centre to co-ordinate their development. 5

In several European countries ethics committees consider both research and clinical ethics. However, the experience of this system in the Netherlands was that research issues dominated the agenda, and there has been a move to separate research ethics committees and clinical ethics committees.

A report on the position of clinical ethics committees and ethics consultation in German Hospitals appears in Appendix A2.

The UK experience

  • CECs were first described in the mid 1990s.
  • There has been a rapid increase in the number of CECs since 2001.
  • The main model of ethics support is an ethics committee or group.
  • There is a national network of clinical ethics committees – the UK Clinical Ethics Network.
  • CECs in the UK are quite different from RECs

Before 2000 there was very little information available about clinical ethics support in the UK. In 1996 Meslin and colleagues 6 described the work of 3 Hospital Ethics Committees and in 1999 Watson 7 described the work undertaken by the Ethics of Clinical Practice Committee in Nottingham. A review of clinical ethics support in 2001 8 found that twenty NHS trusts (4%) had a CEC, and a further twenty were thinking about establishing one. Since 2001 there has been a rapid increase in the number of NHS trusts that have established a CEC. Currently 61 acute and community trusts have a CEC, and in the past 12 months two primary care trusts (PCTs) have registered a committee with the UK Clinical Ethics Network. Unlike North America, and some European countries, it is rare for individual ethicists to work in UK NHS trusts. The most common model of ethics support is a committee / group.

The following shows the range of trusts that have a CEC as a percentage of the total number of CECs in the country (based on 2004 data).

  • Acute Adult 69%
  • Children 6%
  • Mental Health 5%
  • Area Wide 3%
  • Private 3%
  • Hospice 2%
  • Primary Care Trust (PCT) 2%

There is a wide geographical distribution of CECs throughout the UK .

Development of the UK Clinical Ethics Network

In January 2001 representatives of a small group of clinical ethics committees (CECs) met to discuss the future development of clinical ethics support in the UK. This led to the establishment of the UK Clinical Ethics Network, which provides support to CECs in the UK.

See Section B for more detailed information about the Network.

The distinction between Clinical Ethics Committees and Research Ethics Committees

Research Ethics Committees (RECs) were set up to review the ethical issues arising from research within the NHS. It is a requirement under the governance arrangements for NHS research ethics committees (GafREC) issued by the Department of Health 9 that research involving NHS patients or NHS resources receives approval from a REC prior to commencement of the research. The role and conduct of RECs is closely regulated, and is the responsibility of the relevant Strategic Health Authority. There is a central co-ordinating office for RECs that issues guidance and facilitates provision of training of REC members.

In contrast to RECs, clinical ethics committees are advisory and are not governed by government regulation. They sit within individual trusts and often develop as a result of clinician concern rather than managerial directive. There is no requirement for training of members of CECs.

Comparison of clinical and research ethics committees
Advisory Decision-making
Ethics of clinical care Ethics of medical research involving human participants
Not regulated Regulated
Training not compulsory Compulsory training for members
Situated within the Trust / healthcare institution Required to be outside the Trust
No central funding Funding for training of members and administrative support
www.ukcen.net www.corec.org.uk
Clinical Ethics Committees Research Ethics Committees

Functions of Clinical Ethics Committees

The work of clinical ethics committees falls into three broad areas. Some CECs carry out work in all three areas, others focus on just one or two of these areas.

  1. Providing ethics input into trust policy and guidelines around patient care.
  2. Facilitating ethics education for health professionals within the trust.
  3. Providing ethics advice to clinicians on individual cases.

1. Providing ethics input into trust policy and guidelines around patient care

This may take the following form:

  • Developing local guidelines for use within the trust, drawing on national guidance or professional guidance where available
  • Providing ethics input on guidelines produced by other committees or clinical groups within the trust
  • Commenting on and clarifying existing national policies and guidelines

Appendix A3 sets out a list of points for a committee to consider when having input into guidelines.

Appendix A4 describes one ethics committee’s experience of developing a policy on advance directives.

2. Facilitating ethics education for health professionals within the trust

In order to raise awareness of ethical issues arising in clinical practice, and to support decision-making in difficult areas, a CEC may provide or facilitate ethics education and training for healthcare professionals.

This could be achieved in a variety of ways including:

An outline of ethical considerations / frameworks to be included in an induction booklet for new members of staff.
Examples of ethical issues arising in clinical cases discussed in a grand round, facilitated by a member of the CEC.
The CEC hosting an ‘open day’ or session advertising its work and highlighting common ethical issues and ways of addressing them.
Producing an ethics booklet for the trust.
Workshops for groups of healthcare professionals to talk through issues of concern arising for them. For example midwives may have concerns about the ethics of informed consent and antenatal screening.
Seminars / lectures for healthcare professionals covering specific issues, e.g. consent, consent and vulnerable patients; consent and children; confidentiality.

3. Providing ethical advice to clinicians on clinical cases

Many CECs provide support to clinicians by way of identification and discussion of ethical issues arising in particular cases. Such ‘case consultation’ arises from individual clinicians approaching the committee, or often in the first instance the committee chair, for advice about a case that is causing them concern. These cases may be retrospective, where the situation has now been resolved but the clinician is not sure that the decisions made were the right ones; or current, where the decisions are still to be made. Committees that deal with current cases will need to develop a mechanism for responding quickly to requests for advice, including requests that occur out of hours. Discussion of the case will include identification of the ethical issues, consideration of current professional guidance and legal requirements, formulating a view on the most appropriate course to follow, and justification of that view. A key consideration in developing a protocol for dealing with case referrals is the involvement of members of the health care team, patients and / or family members in the discussion.

Where cases frequently arise on the same topic the CEC may identify a need for general guidance on this issue by the trust, and can then provide ethics input into the development of such guidance.

Frameworks for thinking about ethical issues are discussed in section C

Appendix A5 provides a list of issues to consider in setting up a case consultation service

Appendix A6 gives an example of one CEC’s protocol for emergency referral of cases to the committee.

Example of the range of cases presenting to one CEC

  • Autonomy of a patient lacking capacity
  • Treating disruptive patients
  • Breaching confidentiality
  • Rights of a foetus
  • Conflict within team on best treatment for patient
  • Refusal to perform treatment requested by patient
  • DNR Orders
  • Treating violent patients
  • Duty of care
  • Treating prisoners
  • Experimental treatment with an unlicensed drug
  • Treating a patient without his / her consent
  • Health tourism
  • Treatment of Jehovah’s Witnessv
  • Patient decision to refuse treatment
  • Withdrawing treatment
  • Need for consent to treatment
  • Withholding treatment
  • Informing patient of status when test done in error
  • Withholding information from relatives

Example of the range of referring specialities presenting to one CEC

  • Care of the Elderly
  • Intensive Care
  • Chaplaincy
  • Paediatrics
  • Fertility Clinic
  • Psychiatry
  • General Medicine
  • Urology
  • Haematology

Scope of work undertaken by Clinical Ethics Committees

The scope of work undertaken by CECs is extensive and could include:

  • Clinical care.
  • Management issues, for example treatment of staff.
  • Resource allocation at both individual patient and population level.
  • Innovative treatments and the boundary with clinical research.

Some committees will focus on a particular area and not all committees undertake involvement in all areas. The scope of work that a committee is prepared to deal with will probably depend on the perceived need within the trust, but may also depend on the expertise of the members of the CEC. The scope of work that a CEC will undertake should be delineated in its Terms of Reference.

A recent survey of Clinical Ethics Committees identified the range of work undertaken by them, although not all CECs consider the whole range.

The questionnaire findings are summarised in Appendix A7

Range of support provided by CECs (shown as a percentage of CECs surveyed)

  • Advice to clinicians by way of case discussion 82%
  • Contribution to trust policies and guidelines 84%
  • Provision of ethics education within the trust 76%
  • Interpretation of national guidelines 66%

Range of issues on which CECs provide ethical advice (shown as a percentage of those surveyed)

  • Withholding/withdrawing treatment 87%
  • Issues of consent to treatment 82%
  • DNAR orders 79%
  • Advance directives 79%
  • Issues of capacity 79%
  • Refusal of treatment 82%

Different models of clinical ethics support

While a clinical ethics committee or group is the most common model of ethics support in the UK, it will not necessarily be the most appropriate model for some settings or some functions. Other models of ethics support may have advantages in some areas. Below we consider a range of models of ethics support, their strengths and limitations, beginning with the committee model.

  • Clinical Ethics Committee / Group / Forum
  • Sub Committees
  • Case consultation groups
  • Hub and spoke model
  • Ethicist

Clinical Ethics Committee / Group / Forum

A clinical ethics committee (CEC) is multi-disciplinary, usually with lay membership i.e. non-clinical members who are not employed by the trust.

The number of members of CECs in the UK varies from 6 to 26. Medical members tend to outweigh nursing members by two to one. 10 The majority of CECs have a clinician as chair, which has a possible advantage of facilitating access by clinicians to the committee. Committees meet on average once a month for between one and two hours.

The range of membership within one UK CEC
Medical Director Family Liaison Nurse, Paediatrics Anaesthetist Senior Occupational Therapist Lecturer in Medical Law SpR, GUM/HIV Chaplain
Chief Executive Staff Nurse, PICU Gynaecology   Bioethicist HO, Paediatrics Lay Member
Ward Manager Clinical Support Nurse, Surgery Physician   Postdoctoral Research Fellow SHO, Care of the Elderly Secretary to the Committee
Unit Manager for Day Surgery Mental Health Nurse Paediatrician in Intensive Care   Professor of Medical Ethics SHO, Ophthalmology Senior Occupational Therapist
  Palliative Care Team Leader Transplant Surgeon     SpR, Department of Medicine for the Elderly  
    Physician, Care of the elderly        
    Psychiatrist        
Management Nurses Consultants Professions Allied to Medicine Academics Junior Doctors Other

Referrals to CECs are mostly commonly made by clinicians but other healthcare professionals, managers, and increasingly GPs, will bring issues for consideration. Current practice of most UK CECs does not usually involve patients or their families and carers in the committee’s discussion but some committees have considered cases at the request of a patient’s family or carer.

Strengths of the committee model

  • A formal Committee is easily recognised as part of the institutional structure and therefore may have more influence with both clinicians and managers.
  • Multi-disciplinary membership provides different perspectives.
  • Group thinking promotes wide discussion.
  • Relatively easy to set up.

Limitations of the committee model

  • A Committee may be seen to be part of the management structure and disciplinary procedures within the trust and not as a source of support to clinicians.
  • It may not be able to respond rapidly to a request for ethical advice.
  • Case discussion by committee may be intimidating for a clinician (and even more so for the parent or partner of a patient) who has asked for advice and support.
  • Discussing and drafting policies and guidelines in a large group may be unwieldy.

In order to address the limitations of the single committee other models of support may be developed in addition to, or in place of a committee.

Sub committees

A sub-committee may be constituted to consider a particular issue, for example to discuss implementation of a hospital policy or to consider and draft policy or guidelines.

Strengths of the sub committee model

  • Flexible.
  • Small groups of individuals may quickly build up areas of expertise.
  • An efficient way to develop policy and guidelines.
  • Can engage in consultation with specialist groups as necessary.

Limitations of the sub-committee model

  • More limited range of representation / views.

Case consultation groups

This model has been developed to provide a quick response to urgent ethical issues arising within a trust where it would be difficult to constitute a full meeting of the CEC. Those comprising the ‘rapid response’ group typically include clinical and non-clinical members of the CEC. It is necessary to consider how many people will constitute the case consultation group, which members of the committee would be willing to be contacted in an emergency and whether there is sufficiently wide representation from this pool. Cases considered in this way would then be discussed by, or their outcome reported to, the whole committee at a regular CEC meeting. This model is useful where ethics support is frequently provided for case consultations.

Strengths of the case consultation group

  • Responsive to individual cases.
  • Answers immediate needs for ethics support.
  • Less intimidating than a full committee in stressful situations.
  • Group members will develop experience and expertise in case consultation because of increased opportunity to consider cases.

Limitations of rapid response model

  • Requires members of CECs to be available for consultation outside normal meeting times.
  • Constitution of the group may be limited, resulting in a narrow range of views
  • Potential for insufficient review by the committee of individual case consultations. This limitation can be overcome by ensuring a robust process for adequate review of decisions by the full CEC.

Hub and spoke model

In this model the ‘spokes’ are individuals taking the ethics lead within their clinical areas and acting as the first point of contact and ethics resource. If an ethical issue arises within that clinical area the individual lead within that area will facilitate discussion of the issue, and if necessary refer on to the CEC or identify an educational need that requires further attention. Ideally the individual lead will have some ethics education or training. Indeed such training of both ‘spokes’ and members of CECs should perhaps become mandatory. In order to ensure sufficient review, the ‘spoke’ should provide a summary of each case consultation to the next full meeting of the clinical ethics committee (the hub). There should also be a reference back to the hub where the individual lead considers the matter is beyond his / her scope of experience or expertise, or if he / she thinks the discussion would benefit from the wider range of views available in the committee.

Strengths of the hub and spoke model

  • Flexible.
  • Able to respond quickly and informally.
  • Similar cases arising frequently enable a body of experience to build up.
  • The individual lead in each clinical area can be identified and contacted easily.
  • ‘Ear to the ground’ – able to identify ethical issues in clinical areas that might otherwise be missed.

Limitations of the hub and spoke model

  • Potential for insufficient review of spoke deliberations.
  • Difficulty of ensuring sufficient level of ethics expertise in all clinical areas.
  • Individual leads may provide a limited view of the issues.

Appendix A6 show in more detail how a rapid response model may work in practice and the processes to consider in setting up such a model

Ethicist

It is more common in North America than in the UK / Europe for individual ethicists to provide support to health professionals, patients and carers within a health care institution, although some NHS trusts have benefited from the work of an ethicist, for example the Oxford Radcliffe Hospitals NHS Trust.
A brief description of the work of an ethicist is described in Appendix A8.

A guide to setting up clinical ethics support in your trust

In the next section we set out the various stages involved in setting up clinical ethics support in a health care organisation, suggesting things to consider and possible options for an individual or group working their way through the process. It should not be seen as a didactic protocol, rather as a prompt, or aide memoire. Some clinical ethics groups have begun as an informal discussion forum and the following guide may seem too formal an approach for them. However informal forums often evolve into a more formal model and some of the issues discussed will be relevant to all models of ethics support. The related appendices provide examples of the experience of ethics committees as they have worked through various aspects of this process. These are an invaluable resource and we would recommend that you refer to them as you read through this guide.

A detailed account of one group’s experience of setting up a Mental Health Trust CEC is shown at Appendix A9.

Stage 1: Identifying the need and securing an ‘expression of interest’

The perceived need for some form of clinical ethics support in a health care organisation can arise from a range of sources and in different ways. These include:

  • Individual clinicians struggling with ethical issues in their daily practice.
  • Clinicians or managers with an interest in ethics, or with some knowledge of the development of ethics support elsewhere.
  • Managers who wish to incorporate ethics support into the governance structure of the organisation.

Once a perceived need has been identified it will be necessary to gain some expression of interest in the concept from senior managers and clinicians. At this stage this may be no more than support for exploring the issue further within the wider organisation. It could take the form of an approach by clinicians to the chief executive or an approach by a senior manager to clinical directors. One possibility is a brief presentation to a key committee such as the clinical governance committee.

Stage 2: Assessing the level of support / raising interest within the organisation

While it is important to have some champions for the concept of ethics support who will lead its development, it is unlikely to be successful without the interest of a significant number of health professionals working in the trust. A key barrier to the effectiveness of ethics support noted by many CECs is the lack of awareness of the CEC’s existence by many people working in the trust. In the early stages of developing ethics support you need to discover what models of support are likely to be useful and relevant to clinicians, patients and managers. This is often done by informal enquiries among colleagues but a more effective method, albeit one that requires some resources, is to hold a meeting within the organisation to provide information about clinical ethics support and gain the views of as wide a range of people as possible on models of support and type of issue requiring support.

Areas to discuss in the meeting could include:

  • Key ethical issues identified by health professionals within the trust.
  • Description of clinical ethics support, experience from other trusts.
  • Different models of ethics support and preferred model for this trust.
  • Possible functions and scope of ethics support in this trust.
  • Suggestions for membership.
  • Agreement of a core group to draft a proposal to the trust Board.

An example of a workshop outline used by one NHS trust can be found in Appendix A10.

Stage 3: Developing an outline proposal for the trust Board

Information gained from the meeting / workshop in stage 2 can be used in the drafting of an outline proposal to the trust board/executive. Thus if a particular model of ethics support was favoured in the meeting, the drafting group would need to give this model serious consideration as the recommended model in the proposal. It is possible that the preferred model would not be practically achievable, at least in the short term (for example it may be impossible to appoint a clinical ethicist or to recruit and support enough personnel for a hub and spoke model). Specific issues to cover in the outline proposal include:

Reasons for establishing clinical ethics support

Identify why you, or any of your colleagues, see value in setting up a CEC, or other model of ethics support. What led to your interest in this? What were the specific problems that led you to identify a need for ethics support? More generally, what issues might an ethics support service address? You may wish to point out that CECs / ethics support are developing in many trusts across the NHS and that ethics is increasingly recognised as integral to good governance, both at the clinical and managerial level.

Preferred model of support

It is worth pointing out at this stage that the development of ethics support will be an evolving process, so the initial model may be modified in the light of experience, for example the initial model is often a committee but this may evolve to include a rapid response group or a hub and spoke model.

Aims of the CEC / ethics support

Identify the aims of the CEC / support, what does it want to achieve and what does it want to produce by way of recognisable outcomes?

Mode of Action

Will the CEC / support be proactive in the sense of promoting ethics education within the trust and providing input into hospital policy and creating guidelines, or is it more likely to respond to requests from clinicians regarding case consultation?

Role of the CEC

What range of work is it likely to undertake, for example will it principally provide support for clinicians, will it address managerial and resource allocation issues, will it respond to requests from patients and relatives?

Status within the trust

Where will the CEC fit within the trust structure, for example, will it come under the auspices of clinical governance? A successful committee requires institutional support so it is important to think about how the trust perceives the CEC.

Consider:

  • Will the work of the CEC feed into the management structure?
  • Where will the minutes of meetings be sent?
  • To whom is the CEC responsible?

Once approval in principle has been obtained for the outline proposal, a more detailed document can be developed that will form the basis of formal establishment of clinical ethics support in the organisation.

Stage 4 Detailed formal proposal

At this stage you will need to consider some specific issues in detail, including drafting terms of reference for a CEC / support service and CEC membership requirements.

Terms of reference

These should outline:

  • The aims of ethics support.
  • The model of support.
  • The objectives of the CEC / support.
  • The functions and scope of the support.
  • Selection of CEC / case consultation group members, and terms of membership.
  • Referral process for cases and other issues.

Appendix A11 includes examples of Terms of Reference for UK CECs

Membership of the CEC

Chair:

The role of chair is crucial to the effective functioning of a CEC (or of a case consultation group). There are different approaches to selection of a CEC chair, and different approaches may be appropriate for different organizations. These approaches include:

  • The trust / organisation executive can appoint a senior clinician or manager to chair the committee and to take responsibility for setting up the committee and any other support processes.
  • The trust / organisation can appoint an external chair who takes over the chairmanship when the committee is ready to begin work.
  • The committee can elect a chair, once it is established.

These three approaches to selection of a chair have advantages and disadvantages. An external chair provides reassurance that the committee is not an internal clique and emphasises the importance of the patient / public perspective. A senior clinician as chair provides reassurance to clinicians that this is not a quasi-disciplinary process and is more likely to encourage referrals from clinicians. An elected chair reflects a more democratic process, which may be a more appropriate image for an ethics committee to have.

Vice chair

The choice of vice chair can be significant and it is worth considering what the role of the vice chair will be.

  • Carrying out the duties of the chair in his / her absence.
  • Providing a different perspective from that of the chair, for example specifying that either the chair or vice chair is a lay member and the other is a clinician.

In addition you may wish to consider allocating specific roles to members of the committee, for example raising the profile of the committee, convening case consultation groups, developing an educational programme for the committee.

Other members

As CECs are multi-disciplinary it will be worth considering the range of disciplines and backgrounds you would like to include to ensure that the committee provides a broad range of perspectives. Also consider the ideal size for the committee. Too large a group may result in lack of cohesion between members and the way they work together. But disadvantages of a small committee include a lack of diversity of views and the potential that insufficient members may attend on any one occasion therefore meetings may not be quorate. Some CECs have a small core group and co-opt members with particular expertise relevant to the issue or case to be discussed (core plus option).

Membership of CECs in UK NHS trusts usually includes:

  • Doctors
  • Nurses
  • Other healthcare professionals e.g. dieticians, speech therapists
  • Lay members
  • A lawyer
  • A chaplain or other religious leader
  • A patient/user of the service
  • An ethicist or philosopher
  • See above for an example of the membership of one UK CEC.

A ‘lay’ member can be described as a person with no clinical experience or other expertise that the committee is seeking (e.g. legal expertise), and who is not employed by the trust. Think carefully whether you wish to have a patient or service user perspective or a more general lay perspective, or both. For a patient or service user perspective, the lay members should be patients or former patients, or a member of a patient organisation. A more general lay perspective could be provided by non executive members of the trust, or by people from the local community who fulfil the above definition of lay member.

A discussion of issues to consider in appointing lay members is provided in Appendix A12.

If there is to be a legal member of the committee then consider whether this will be the trust legal advisor. If the trust legal advisor is a member of the committee then his / her role needs to be clarified. He / she will be able to advise the committee on what is legally permissible, but may also channel the discussion along a line that is dictated by legal risk management rather than ethical considerations. It is important that he / she distinguishes his / her role as a committee member from his / her role as legal advisor to the trust. Several CECs in the UK have successfully included the trust legal advisor as a member of the committee. If a non-trust lawyer is a member of the committee, his / her particular area of expertise may have a bearing on his / her contribution. A lawyer who specialises in medical law will be able to comment more authoritatively on legal aspects of the issues brought to the committee than say a lawyer whose expertise is commercial law.

Other issues for membership

  • How will you ensure appropriate ethics expertise or experience across the membership of the committee?
  • Is there an expectation of a minimum yearly attendance, and if so would non- attendance require resignation?
  • What is the length of term of office of a) members, b) chair and vice chair?

Secretarial / Administrative support

Administrative support is important to the smooth functioning of the committee and involves a number of functions:

  • Sending out notices of meetings.
  • Circulating in advance cases and documents to be discussed at meetings.
  • Writing up and circulating minutes and cases discussed.
  • Identifying relevant training for members.
  • Creating a library of ethics resources.

Financial support

Consider whether the administrator will be paid or have set aside protected time for duties associated with the work of the CEC. Will there be funding available for education and training of members of the committee? A business plan should be drafted with realistic costings for various options depending on the level of CEC activity envisaged.

A formal proposal is then presented to the board/executive

Appendix A13 is an example of a proposal document for the trust.

Stage 5: Getting started

When formal approval is obtained the following practical considerations may be addressed:

Recruiting members

There is a need to consider how members will be recruited. To ensure a diversity of expertise and moral perspectives, it would be most appropriate to advertise for members rather than relying on ‘word of mouth’ recommendations or simply using the core group that developed the initial proposal. Advertising can be done through the trust intranet or newsletter, or perhaps by direct approaches to heads of clinical units to disseminate information about the CEC and invitations for applications. A personal approach to people who attended the initial meeting, if one was held, may target those with an interest in joining the committee. For potential members from outside the trust you may wish to consider advertising through the local PCT (GPs and other primary care professionals), and relevant departments in the local University (ethics / philosophy / law). Some committees have found that recruiting lay members is a difficult process.

A discussion of issues to consider in appointing lay members is provided in Appendix A12.

Few CECs in the UK have interviewed for committee members but this may become more common as CECs become an accepted part of NHS organisations. CECs already established may wish to consider interviewing potential new members as current members reach the end of their tenure. Conducting interviews for CEC members requires some thought. Key considerations are:

  • Who will conduct the interviews?
  • What criteria are used to guide the interview process?
  • Will the same procedure be used for initial membership of the committee and subsequent replacement when an individual member leaves the committee?

Criteria used by one committee in interviewing potential committee members is given in Appendix A9.

Promotion / advertising of CEC

In order to generate sufficient referrals to the CEC it must have a recognised profile within the trust. Consider advertising the work of the CEC:

  • In the handbook for new staff
  • In the trust newsletter
  • On the intranet
  • With the Patient Advisory and Liaison Service
  • In leaflets placed around the hospital
  • Local GP surgeries

Meetings

Frequency of meetings

Most CECs meet once a month or once every two months but some meet only where a case has been brought for discussion or there is ongoing work such as drafting of guidelines or consideration of a policy.

When and Where

If members are attending in their own time then it will be necessary to choose a time when most can attend on a regular basis. If it will prove difficult to choose a generally convenient time and place for meetings of the committee, then the hub and spoke model described above may provide the necessary flexibility.

Training and education

In order for the CEC to be seen to have authority, for its views to stand scrutiny and to merit referrals by members of staff, there should be sufficient ethics experience and knowledge within the committee. It is usually the case that one or two members will have some formal ethics education but to ask them to provide training for the other members of the committee could be seen as unduly onerous.

  • Will members themselves be responsible for their ethics education?
  • Will they receive financial support to attend workshops, buy books and if so what is the limit per member?
  • Consider ethics training sessions perhaps with an invited speaker / facilitator.

Committee process – considerations about how the CEC functions

Process of ethical discussion

It is necessary for the CEC to be able to demonstrate to the trust that its decision-making process and the advice it gives can be justified. Therefore the CEC needs to have an explicit process for ethical discussion. This will ensure accountability and consistency of its decisions.

The following points are important in considering the process for ethical discussion:

  • Declaration of personal interests and views, such as membership of relevant interests groups e.g. Voluntary Euthanasia Society.
  • An explicit framework for the process of considering a case. An example of such a framework is set out in Section C.
  • A mechanism for ensuring that the relevant facts of the case are ascertained, including the views of all those who will be affected by the outcome.
  • The views of all members of the committee / group should be heard.
  • Members should be prepared to justify their views in the light of counter arguments.
  • Formally test the consensus view of the committee with counter-arguments in order to justify the final conclusion.
  • Clearly state the ethical reasoning behind individual and consensus views.
  • Identify the relevant legal and professional frameworks (See Section D).
  • If legal terms such as ‘battery’ are used in the deliberations of the committee legal advice may need to be sought to ensure correct usage of the terms when recorded in the minutes.
  • Minutes of meetings of the CEC may in some instances be disclosed to those outside the trust (see Section F). Discussion of an ongoing case forms part of the medical record of the patient. Therefore it is extremely important that the committee adopts measures to ensure that its deliberations and decisions are transparent, factually and legally accurate and can withstand scrutiny.

Referrals and documentation

  • Consider a pro forma for case referrals that sets out details of the person referring the case, the outline issues of the case and the advice sought.
  • Who will be able to refer cases to the CEC?
  • Is there a procedure to be followed if a member of the CEC is approached for informal ethics advice because of their position on the CEC?
  • Consider whether a rapid response service will be provided and if so the process to implement it.
  • What administrative systems are in place - drafting of minutes, filing records and disseminating information to members and those in the trust?

An example of a pro forma referral form is shown in Appendix A14.

Confidentiality of committee

Consider the process to be put in place to ensure all members, and those attending meetings to present cases, are aware that they are under a duty of confidence. Members of the CEC who are healthcare professionals will have a professional, ethical and legal duty to maintain confidences of patients of the trust. Lay (non trust) members should be made aware that they too have a duty of confidence, and this may best be achieved by asking that they sign a confidentiality agreement on joining the CEC.

Confidentiality issues also arise in respect of drafting cases for discussion at CEC meetings and writing up of minutes of the meeting.

Cases for discussion

There should be sufficient anonymisation of those cases brought to the CEC for discussion. Care should be taken to ensure that no factors identifying a patient are included in the write up of the case to be circulated to members for discussion. If certain factors are relevant for the discussion then perhaps the Chair could be ‘key-holder’ of the information, to exercise his / her discretion to reveal it to the meeting if he / she considers that necessary.

Minutes of meetings

Where individual cases have been discussed, the minutes of the meeting should not contain information identifying the patient. Nor should they identify a member of the CEC who has expressed an opinion. You may wish to consider having a general summary of the meeting that can be distributed fairly widely and a confidential section of the minutes, which is only available to committee members. Remember that sections of the minutes relevant to a particular case will form part of that patient’s record if the patient is identifiable or if the case discussion had an impact on the patient’s management.

Indemnity

In theory it may be possible for a member of a committee who is not a trust employee to be individually liable to legal action. Many trusts provide indemnity for non-employee members of the CEC. The contact details of CECs where this is the case can be obtained from the Network (admin@ethics-network.org.uk)

See Section F for more information about confidentiality and the legal liability of members.

Reading

Aulisio MP, Arnold RM, Younger SJ (eds) Ethics consultation: From theory to practice. Baltimore: Johns Hopkins University Press (2003).

Ehleben C M, Childs B H, Saltzman S L. What is it exactly that you do? A “snapshot” of an ethicist at work. HEC Forum. 1998;10(1):71-4.

Jiwani B. An introduction to health ethics committees. Provisional Health Ethics Network (2001).

Journal of Medical Ethics – Clinical Ethics Committees Supplement 2001, April, Vol 27, Supplement 1.

Komatsu G I, Goodman-Crews P, Cohn F, Young E W. Effect of ethics consultations on non beneficial life-sustaining treatments in the intensive care setting: a randomised controlled trial. Journal of the American Medical Association. 2003;290(9):1166-72.

Larcher V, Lask B. McCarthy J. M. Paediatrics at the cutting edge: Do we need ethics committees? JME1997;23:245-9.

Slowther A, Bunch C, Woolnough B, Hope T. Clinical Ethics Support in the UK: A review of the current position and likely development. 2001; London; The Nuffield Trust

Slowther A, Hope T. Clinical ethics committees: They can change clinical practice but need evaluation. BMJ 2000;321:649-650

Spicker S (ed) The Healthcare Ethics Committee Experience. Krieger Publishing Company. 1998

The report of the American Society for Bioethics and Humanities, Core Competencies for Health Care Ethics Consultation, 1998

Thomson A. Critical Reasoning in Ethics: a practical introduction. Routledge. 1999.

Watson AR. An ethics if clinical practice committee: should every hospital have one? Proc Roy Coll Phys Edin 1999;29:335-337

Wilson Ross J, Glaser JW, Rasinski-Gregory JD, McIver Gibson J, Bayley C. Health Care Ethics Committees: the next generation. American Hospital Publishing, Inc. 1993.

Copyright for Section A is held by The Ethox Centre.

References

1. Slowther A, Bunch C, Woolnough B, Hope T. Clinical Ethics Support in the UK: A review of the current position and likely development. 2001; London; The Nuffield Trust paragraph 3.1.

2. Joint Commission for Accreditation of Healthcare Organisations. 1996 Comprehensive Manual for Hospitals. Chicago: JCAHO, 1996: 95 – 97.

3.Meslin E, Rayner C, Larcher V, Hope T, Savulescu J. Hospital Ethics Committees in the United Kingdom. HEC Forum 1996; 8(5):301-315 page 301

4. Slowther A, Bunch C, Woolnough B, Hope T. Clinical Ethics Support in the UK: A review of the current position and likely development. 2001; London; The Nuffield Trust paragraph 9.4.1

5. Holm S, Clinical Ethics Committee in Norway - Highly Recommended by the Norwegian Parliament http://www.ethics-network.org.uk/international/intlspec/norway.htm

6. Meslin E, Rayner C, Larcher V, Hope T, Savulescu J. Hospital Ethics Committees in the United Kingdom. HEC Forum 1996; 8(5):301-315

7. Watson AR. An ethics of clinical practice committee: should every hospital have one? Proc Roy Coll Phys Edin 1999;29:335-337

8. Slowther A, Bunch C, Woolnough B, Hope T. Clinical Ethics Support in the UK: A review of the current position and likely development. 2001; London; The Nuffield Trust

9. Governance arrangements for NHS research ethics committees. Department of Health. 2001. Available online

10. UK Clinical Ethics Network, Report on the Network Questionnaire, 2003, see Appendix A7