Establishment, composition, management, and accountability

The title “forum” was used to avoid the bureaucratic connotations of “committee”, and to emphasise the intention to provide a facility for considered, informed, and reflective discussion.9 The forum’s confidential, advisory, supportive, and non-prescriptive role safeguards clinical autonomy, protects the doctor–patient relationship, and facilitates participation and free discussion. Consultation is optional and there is no obligation to follow recommendations, although evidence suggests that those who seek advice would be likely to take it.10Although accountable to the Trust Board, the forum’s independence is important for its integrity and in gaining confidence of clinicians. Administrative support is essential for proper record keeping and has been provided from the research and development office at the Institute of Child Health.

The ideal size and composition of HECs depends on their intended functions. Prospective case review is best accomplished by small groups,11 but for more complex issues a larger membership is desirable,5 although group dynamics may be more problematic.12 The forum’s membership includes physicians, surgeons, nursing staff, a social worker, and a chaplain, with 30% lay membership. The last’s contribution is especially valuable because of differing perspectives and experience; lack of detailed scientific knowledge has not proved a barrier, rather it has emphasised the need for effective communication skills to presenting clinicians. Both chairman and vice chairman are elected by members; one of these officers is a lay member. No formal qualifications are required but 20% of serving members have formal training in moral analysis and two have postgraduate qualifications in ethics and law. No difficulties have been encountered in recruiting and retaining lay members but turnover of medical staff has been high, largely because of competing clinical or other commitments.

Some Trusts have developed HECs as part of a clinical ethics service7 and have employed clinical ethicists, usually as part of academic departments with responsibilities for undergraduate teaching. Clinicians appear to favour a committee approach and have preference for clinically trained ethicists.8 Some UK committees have included lawyers7; the forum does not although it has contacts with academic, legal opinion. The role of avoiding litigation, a feature of American committees,13has not been one of the forum’s functions.

The legal status of HECs has not been defined in the UK. By analogy with research ethics committees, HECs might be expected to:

• act in a reasonable fashion with due care

• have proper terms of reference

• be properly constituted (with arrangements for membership review)

• establish proper working procedures

• show accountability by publishing an annual report.14

The clinical ethics forum, which has written terms of reference and details of constitution, holds monthly minuted meetings and has published reports of activities.

Case analysis and discussion

A primary function of many American HECs is case analysis, either in response to issues raised by a specific case (post hoc analysis) or before critical decisions, such as withholding or withdrawing life sustaining treatment, are made (prospective analysis). Both forms satisfy requests for guidance, help prevent disputes within multidisciplinary teams, and separate ethical from technical or scientific issues. The prospective approach may:

• fail to respect clinical autonomy

• erode doctor–patient relationships

• risk undermining patients’ interests in favour of those of the staff or the hospital

• enhance rather than prevent interprofessional dissent

• increase bureaucracy and reduce time available for patient care.15

The forum thought it wiser to begin with post hoc analysis because it is less threatening and intrusive. By emphasising confidentiality, asking that teams rather than individuals attend the forum, and underlining the voluntary nature of both consultation and following recommendations we believe that we overcame most of the above criticisms.

POST HOC ANALYSIS OF CASES AND TOPICS

Cases and topics were brought by invitation of the forum or request from staff; discussions usually lasted 1–1½ hours. Members of the Forum also facilitated independent discussion of cases with staff from units (such as paediatric or neonatal intensive care) where ethical dilemmas, many involving withholding or withdrawing treatment decisions, frequently arose. Over 20 cases were discussed in three years. They included:

• Parental refusal of procedures—for example, gastrostomy, thought to be in the child’s best interests

• Conflicts over information that staff or parents thought a child ought to receive

• Management of behaviour potentially harmful to others in a disturbed adolescent after transplantation

• The action that should be taken when management of children in referring hospitals fell short of established good practice to their likely detriment

• Prescription of experimental treatment that the local health authority might not sanction

• The use of home total parenteral nutrition (TPN) in children with multiple medical and neurodevelopmental problems.

Broader topics discussed included xenografting in children and the use of covert video surveillance in the diagnosis of factitious illness.

We emphasised the need for teams to provide as comprehensive accounts of cases as possible, including medical facts, prognosis, results of psychosocial evaluation of the family, and the importance of sharing this information. Analysis of individual cases highlighted problems in communication due to lack of sufficient information, comprehension or time available to receive, absorb, and reflect on it. The feedback we received from teams was positive but we felt that we should interpret this with caution.9 Those present felt that the clinical and ethical complexity of issues for family and staff had been aired and that neither time available for patient care nor clinical freedom had been eroded.

In one particular group (the home TPN patients) discussions led to the establishment of a working party whose recommendations included a comprehensive psychosocial and ethical review before commencing home TPN. A small group, comprising the multidisciplinary home TPN team, a person with ethical expertise, and the parents meet following the psychosocial assessment to discuss whether home TPN is in the child’s best interests. Time is given to reflect on the discussion before any final decision is made. This technique enabled us to fulfil the prospective case discussion function of American HECs with minimal problems. The forum has not been involved in other prospective critical decision making unless invited by clinical teams.

Contribution to the generation of guidelines for good ethical practice

Members of the forum have been involved both individually and collectively in developing guidelines and policies on consent and the use of medical illustration. The usual process involved smaller working groups co-opting relevant expertise before submitting a draft policy to the forum. Some institutional ethical guidelines—for example, the Royal College of Paediatrics and Child Health framework document16 and the British Medical Association consent policy, have used similar construction techniques with the ethics committees having overall responsibility. Constructing such guidelines has some parallels with clinical guidelines; the latter have established criteria for determining provenance, reliability, and evaluation, which we have tried to follow.17 Drafting multidisciplinary guidelines requires collaboration, communication, and interprofessional respect; implementation requires clear understanding of individual professional roles and responsibilities, and sense of co-ownership. Inevitably, policies draw criticisms from those who feel that they threaten clinical freedom, are too detailed, or strike the wrong balance between ethics and law. Guidelines that are developed in response to a particular clinical problem, such as the use of home TPN, are more likely to be accepted and used.

The forum has also contributed, with other relevant groups including hospital planning and management teams, to policies having a significant ethical component such as the philosophy of a chronic ventilation unit. Close collaboration with other interested groups is vital to prevent misunderstanding of roles and duplication of work such as risk management teams and consent, resuscitation committee and “do not resuscitate” orders, clinical governance, and good practice.

Any guidelines and policies are submitted to relevant hospital clinical and administrative groups for ratification. The forum has not rewritten national guidelines but has felt it reasonable to modify them where necessary to accommodate local needs. All ethical guidelines or policies must comply with current UK law.

Education

Disparity exists between the training in ethics and law that doctors and nurses receive; while ethics is an established core component of nursing curricula it has only recently achieved this status in medical education.18 There is no clear consensus on how ethics and law should be taught to postgraduates. Members of HECs should become familiar with ethical principles and theories, study relevant cases, policies, and legislation and have access to relevant literature. By developing expertise in practice HECs can undertake education of other professionals.

Case analysis based education may be opportunistic rather than structured but teaching programmes based on core curricula can be developed as part of a properly resourced ethics service. Members of the forum have given seminars, lectures, tutorials and contributed to postgraduate meetings and teaching courses. Biannual study days in ethics (topics: transplantation, children’s rights, and adolescent medicine) have been held and have received good evaluations from participants. There is considerable future potential for innovative teaching activities, especially in the area of continuing education and involvement of older children in teaching.

HECs, research, and research ethics committees

Although research ethics committees (REC) rather than HECs undertake prospective ethical review of research both may (as at Great Ormond Street and Oxford) share members. HECs may engage in research that is reflective and analytical—for example, by examining claims that new treatments or techniques carry no fresh ethical implications. In consequence, they may articulate questions or concerns that can, with scientific arguments, be integrated into policy making.19 For example, the forum has considered arguments surrounding the proposal to remove, store, and manipulate gonadal tissue from prepubescent children at risk of sterility induced by cancer treatment.

The forum has also set out to ascertain the prevalence and nature of ethical perplexity among trust staff, and is developing techniques to audit and evaluate its role.

The future of HECs in the United Kingdom

There is lack of clarity over how ethical advisory services in UK hospitals should be provided or resourced.4 7 8 The clinical ethics forum has fulfilled most of its intended functions, albeit with limited resources. Its input has been valued; resistance has come mainly from those who fear erosion of clinical freedom and time for patient care, mistrust further bureaucracy, or doubt the cost effectiveness of a clinical ethics service. While the last point is important, there are powerful arguments for such a service; these may be summarised as follows.

Medical practice involves human activities where normative values, as much as scientific fact, technological capacity, and cost benefits, are important and are not the sole prerogative of clinicians. Increasing technological complexity and pressure on resources may have diminished its humanity.20 Ethics, perhaps via HECs, can represent the values and practices that define the hospital as a humanitarian community and ensure it remains aware of its moral rather than commercial responsibilities.21 Like the chorus in Greek drama HECs offer advice, historical perspectives, and support; they express moral concern and sympathy for those involved without usurping their roles.22 Finally, the process of ethical review confronts and acknowledges ambivalence and uncertainties in decision making rather than merely achieving an outcome.15

The moral purposes and values of modern medicine need examination, affirmation, and protection as much as ever. Properly constituted, resourced, and audited HECs, whether acting alone or as part of a clinical ethics service have a pivotal role in this process.