Evaluation of case consultations in clinical ethics committees

Although clinical ethics committees (CECs) exist in many hospitals in many countries, systematic evaluation of their work is still relatively scarce. ^1–3 Critique of how the CECs discuss individual patient cases is even scarcer. Evaluation is important to justify the resources spent on this work. ⁴ But more importantly, scrutiny is crucial in order to improve the quality of the work. ^2,5,6 This, in particular, applies to discussions of dilemmas related to individual patients, since such discussions may influence clinical decisions, either directly through advice given to clinicians or indirectly by influencing clinicians’ way of thinking. Furthermore, scrutiny of what a discussion of individual patient cases in a CEC may add to clinical work may contribute to sharpen the CEC's identity. ^7,8 However, evaluation of CECs’ ethics case consultations is challenging. Many of the cases are complex and require extensive and interdisciplinary knowledge. Several stakeholders and opinions may be involved. Furthermore, various methods and multiple goals are used. This study presents a feasible and practical method of evaluating case discussions in CECs and the results emerging from the use of this method in a pilot study in Norway. To our knowledge, no previous studies on CECs have made use of the same method.

Development of CECs in Norway

The first CECs in Norway were established in 1996. Today all of the 23 hospital trusts (providing specialized and hospital-based health-care services) have established at least one committee. The Center for Medical Ethics (SME) at the University of Oslo, Oslo receives annual funding of €280,000 from the Ministry of Health and Care Services to coordinate with the committees, and to facilitate competency building for committee members. This is done by arranging national seminars and by assisting the committees in local seminars and case consultations, through evaluation and research, and by recommendation of relevant literature. For example, SME arranges an annual national seminar partly devoted to practical issues in which the committees can share experiences. Usually about 150 CEC members attend this annual seminar.

In 2004, SME initiated a national research project to evaluate the work of the committees. A survey addressed to 28 established CECs revealed that the committees were composed differently and worked differently. ⁹ All CECs were interdisciplinary, with 9–12 members – mostly physicians, nurses and other health-care personnel. Few committees included a patient representative as a member, and less than half of the committees had a lawyer or an ethicist as a member. The research project also included a qualitative study including in-depth interviews with clinicians who evaluated clinical ethics case consultations to which they had referred cases. The clinicians described the ethics consultations as useful when a systematic, inclusive and transparent approach had been used. ¹⁰ Finally, the research project included observations of committees discussing the same paper case about a patient and his wife defying a ‘do not attempt resuscitation’ (DNAR) code. ¹¹ This study revealed that the committees in their case discussions used different approaches and dealt differently or implicitly with relevant legal aspects and key concepts – such as ‘futile treatment’, when is a patient ‘dying’ and what is the role of the relatives. ¹²

On the basis of the 2004 evaluation, our conclusion was that the CECs needed to increase the quality and transparency when discussing cases involving a particular patient. Thus, in close cooperation with the CECs we started to elaborate a manual for the CECs’ work. ¹³ Since the evaluation indicated that systematic and transparent analyses and discussions are important for the quality of the CECs’ work, the manual attempts to give practical guidance on how to achieve this. The manual recommends a six-step model for discussion of individual patient cases (Box 1). This model or procedure had already been used by several of the committees with positive experiences.

Box 1

The procedure for case discussion recommended in the CEC manual.

1. Define the ethical problem(s)

2. Describe all facts (including medical and psychosocial facts)

3. Provide details of the parties involved

4. Identify the values and relevant laws at stake

5. Based on the above, identify and discuss possible solutions of the case

6. Conclusion, follow up and evaluation

The manual emphasizes that the most important responsibility of the clinical ethics consultation services is not only necessarily to end up with specific advice, but also to secure a thorough deliberation. A recent study shows that this is the most frequent reason why clinicians consult a CEC in Norway. ¹⁴ The importance of facts, medical as well as psychosocial, related to the patient's situation, is heavily stressed. Likewise, it is underlined in the manual that uncertainty or disagreement regarding these facts should be recognized. One goal of the committees’ work is to secure that the patient's perspectives and interests are adequately covered, when ethical dilemmas are discussed. ^15,16 Thus, the manual emphasizes the inclusion of the patient or a representative, both in the concrete deliberations and among the committee members.

The current study was undertaken after the publication of this manual. The aim was to evaluate the ethics committees’ case discussions and to compare the conclusions reached by the committees, their arguments, justifications and interpretations.

Material and methods

At the annual national meeting in 2006, SME asked all the committees to submit an anonymized case that had been discussed by the committee, and which could be shared with the other CECs in order to compare the CECs’ case discussions. From the cases submitted we chose one and slightly changed the information which could divulge the identity of the patient or the hospital trust (Box 2).

Box 2

The paper case discussed by the committees

Withdrawal of intensive care treatment in a youth with extensive damage of brain and spinal cord.

A 14-year-old patient is treated in the intensive care unit after a serious traffic accident 2½ months ago. All cerebral functions are severely impaired, but some function of the medulla oblongata is intact. Repeated CT and MR examinations at two different hospitals showed extensive cortical injury, atrophy of the cerebrum and cervical spinal injury (C4). An isoelectric or ‘flat line’ electroencephalogram confirms the serious situation. Other electrophysiological investigations and clinical neurological examinations confirm these findings.

The patient has primitive reflexes and there is no evidence of voluntary movements. She is fed through a percutaneous endoscopic gastrostomy tube and is on artificial ventilation. She receives 24-hour comprehensive care and physiotherapy.

All doctors who have examined the patient agree in their conclusion: the patient is in a state which is incompatible with a meaningful life. There is consensus within the treatment team that the life-prolonging treatment should be withdrawn. This is not done, however, because the parents do not accept the prognostic considerations and disagree that treatment should be terminated. They argue that their child is alive, and that they wish to take care of her. The parents also have a younger child who is in need of extensive help and support from the parents.

The doctors feel that continued treatment will strengthen the parents’ unrealistic hope of future improvement of the child's condition. They feel that the futile treatment represents a great strain on the treatment team.

The parents want foreign specialists to assess the condition of their child.

The clinicians are in doubt about how to deal with the parents’ wishes, and contact the hospital's CEC.

This case was then sent to all 37 Norwegian CECs. The CECs were asked to deal with the case as they would do if it was a real case, to prepare a written report of the discussion, and to send this report to SME. The CECs were asked to include in the report whether they would have given any specific advice and, if so, what kind of advice.

The case reports were studied by the two authors independently, with a focus on whether and how the committees used the six-step model presented in the CEC manual (Box 1) and the questions above. The main content of the written reports are presented in the next section according to these six steps, and condensed examples of the CECs’ analyses and answers are given. Preliminary analysis was presented and discussed with all the participating CECs in the annual national seminar for CEC members, and distributed by email to all the CECs in Norway – both to avoid haphazard interpretions and to give the committees feedback.

The case was chosen because the ethical challenges involved are common in the CECs’ work (i.e. withdrawing life-prolonging treatment), and since it includes a mixture of ethical, legal and medical questions – something which is typical for CECs’ work. According to Norwegian law, patients must consent to medical treatment. ¹⁷ Parents are entitled to consent on behalf of patients under 16 years of age. ¹⁸ However, patients cannot demand treatment which is judged to be futile or contrary to the patient's best interest, as judged from the best possible medical facts and sound value assessments. ¹⁹

Results

Seventeen committees returned a report from their discussion of the case (46%). Many reports were quite extensive, constituting several pages, while one report was written in less than one page. Compared with the 2004 study, the reports indicated that the CEC discussions were conducted more systematically. More committees now prepared written reports from their deliberations as a routine, and all but four of the reports were explicitly structured according to the six-step model (Box 1). Two of the four CECs not using the six-step model to structure their report, are, however, known to use the six-step model in their work, and the reports included all or most of the elements, but more implicitly. Another committee used a casuistic approach in their deliberations and report, which also included most of the elements in the six-step model. The way the reports were structured made it relatively easy to compare similarities and differences between the committees’ reports.

All the CECs stressed the importance of obtaining a dialogue with the parents, and paying great attention to their needs and feelings. The reports also showed some discrepancies between the CECs.

The ethical problem(s) identified

Although the first point in the recommended model is to identify the ethical problem involved in the case, 10 of the 17 committees did not identify the ethical problem explicitly in their report. The most frequently described ethical problem was ‘when is it ethically justifiable to withdraw the life-prolonging treatment’. Other problems identified were: what role should parents play in such decisions; what constitutes a meaningful life; how and when can prolongation of patient suffering be ethically justified; and is it acceptable to treat one person for the sake of others.

How did the CECs deal with facts?

The CECs dealt somewhat differently with the medical facts given in the paper case. Most CECs accepted the medical information given and concluded that the patient had severe and permanent brain damage and that the prolonging treatment was futile or meaningless. Two CECs concluded that the patient was in a vegetative state, and one committee wrote that the patient was ‘most likely brain dead’.

Contrary to these assessments, two CECs stressed that they needed more medical information to deal with the case, i.e. more neurological tests. One CEC stated that it was too early to give up, since improvement could still take place in a young person 2½ months after an accident.

The CECs also approached the patient's possible suffering differently. Some emphasized that the patient was suffering, some said that she probably could not experience pain, others said that this should be explored, while others, according to the reports, did not discuss the patient's possible suffering at all.

Several CECs expressed the view that vital information about the parents was lacking: why did the parents so strongly oppose forgoing of treatment, what was their opinion of a meaningful life, did they feel guilty for the girl's accident and, if so, was this the reason why it was so hard to accept her imminent death?

Involved parties

All committees identified the same involved persons, most importantly the patient, her parents and sibling, and the personnel involved in the treatment. Ten of the 17 CECs mentioned the interests of society/other patients who may not get necessary treatment because expensive and futile intensive care treatment was given in this case.

Although all CECs had the relationship to the parents in focus, they varied in how they referred to the parents and their perspectives. Some described the protection of the parents’ interests as the most important responsibility for the health-care personnel, and that the parents’ reasons for not accepting the medical facts and previous clinical communication should be explored. Was the reason why they so strongly opposed giving up treatment that the doctors had been too optimistic right after the accident? Some CECs described that the parents in an authoritative way, assuming that they did not know their child's best interest. Accordingly, they should be given the medical facts to be convinced that treatment was not in the patients’ best interest.

Values and legal regulation

All CECs identified a number of value issues involved in this case: beneficence, non-maleficence, justice and parent/patient autonomy, and the patient's right to a dignified death. Beneficence was defined as the responsible health-care provider's duty to act according to the youth's best interest, including considering long-term consequences of continued intensive care treatment. Justice was seen as the health-care personnels’ duty, to avoid over-treatment and avoid spending limited resources on futile interventions. Autonomy included both the parents’ right to act on behalf of the youth and professional autonomy to treat the patient according to their professional evaluation, such as giving good palliative treatment and securing a dignified dying process. Other values mentioned were respect for life, and also trust and confidence: how should one approach the parents’ possible unrealistic hopes in an honest way without undermining trust? Health-care workers’ courage to meet the parents in an honest way was also mentioned as a value. One committee problematized the definition of a meaningful life; who is to decide what is meaningful, and on which criteria should such an assessment be based?

Few CECs explicitly mentioned relevant laws. The reports revealed that the Norwegian law was sometimes misinterpreted, i.e. that the parents are legally entitled to a new assessment or second opinion, and that parents can demand treatment which is not medically recommended on behalf of their child. However, a majority of CECs stated that the parents could not decide that futile intensive care treatment should be prolonged contrary to the clinician's judgement.

Possible solutions and conclusions

The main questions in the case was whether the parents should be granted a new assessment from foreign specialists, and what should be decided regarding the life-prolonging treatment. The committees varied somewhat in their answers to these questions.

A new assessment or second opinion by foreign specialists?

Eight committees recommended a new assessment by foreign specialists, five said no, whereas four did not take an explicit stand. The reports revealed that the concept ‘second opinion’ or new assessment was interpreted differently by the CECs. Although some committees stated that the magnetic resonance (MR) and computerized tomography (CT) already performed at two different institutions represented second opinions, one committee claimed that a ‘true’ multiprofessional second opinion had not been given, and accordingly it should be.

Reasons for recommending a second opinion varied: granting this would be to take the parents’ wish seriously, it would increase trust in the hospital, it would help hasten withdrawal of the life-prolonging treatment (when second opinion confirmed the clinician's conclusion) and that it was the parents’ legal right (incorrect).

Reasons for denying a second opinion from foreign specialists also varied. One was that a second opinion was already done, another that the medical facts were unambiguous. Other reasons for not recommending a second opinion were that this might give the parents new and unjustified hope, that this would not be in the patient's best interest because it would prolong treatment and thereby also suffering, and finally that transportation of the patient to another hospital to obtain a second opinion would be too much for her. One CEC would not recommend a second opinion because the conflict between parents and health-care personnel was already too deep to be resolved by any new measures.

Should treatment be foregone?

Four alternative solutions were identified:

- to stop treatment quickly;

- to stop treatment at a later stage to leave time for the parents to adjust;

- to continue the life-prolonging treatment at today's level, but not treat upcoming complications like pneumonia;

- to treat the patient for an indefinite time span at the parents’ request.

The last alternative was recommended by none. Five CECs did not conclude as to whether intensive care treatment should be prolonged, and two CECs maintained that it was too early to withdraw treatment. Ten committees concluded that the life-prolonging treatment should be withdrawn ‘in due time’, i.e. after dialogue with the parents, or after a second opinion had been given. Several committees would advise the clinicians to attempt to improve communication with the parents, possibly with the help from a skilled person not part of the treatment team. One committee claimed that although it is important to pay attention to the parents’ feelings and interests, it is wrong to let futile treatment of the child serve as an existential help to the parents who refuse to accept the truth. Two committees concluded that the life-prolonging treatment should be stopped quickly.

Discussion

This study presents a novel and achievable way to explore, compare and evaluate CECs’ discussions. Scrutiny of case discussions may be done in other ways – e.g. using audio or video recordings, and simulated patients for training or research purposes. Furthermore, the data may be analysed in various ways, for example using other qualitative methods, or other normative or theoretical perspectives. The method used in this study may also be used for educational purposes. As one committee wrote to us:

This is the first time our committee has dealt with a case so close to the difficult clinical situations of treatment, including external demands, and with a time limit. At first we scheduled the case for a regular meeting, among other cases. We found that we needed more time. We forgot to hear everyone's immediate thoughts about the case in the beginning. When we got to possible solutions, and our time was running out, our discussion froze up. We scheduled a new meeting. At this time, the participants were less emotional, and our discussions could proceed in a more constructive way. (…) This has been a highly valuable practice situation for our committee. We thank you for the task.

In this study, less than half of the CECs contacted returned a written report. However, the most experienced CECs in Norway participated in the study. Some of the CECs at that time had very little experience with discussing patient cases and a few committees were actually non-functioning. This is one likely explanation for the low response rate. Lack of administrative help to write a report may, in addition, be an explanation for why some CECs did not participate. Owing to the qualitative nature of this study and the low response rate, generalizations should be done with great care.

However, most of the returned reports were thoroughly prepared and structured, and resembled reports from actual discussions. Thus, the use of a paper case and written reports provided rich data to analyse and compare the CECs’ discussions. Assessing case discussions based on a paper case has, however, several limitations. One obvious limitation is that the facts are limited, and necessary additional information cannot be sought the way that it can when the involved parties discuss an actual case. Another limitation of this study is that we build our evaluation on written reports and not on observation of the actual discussions in the committees as we did in 2004. ¹¹

With all these limitations in mind, the present study indicates that the efforts to structure the work of the CECs has been worthwhile. The reports of the committees indicate that the discussion of patient cases now is done in a more structured way, and that therefore the most important components in an ethical case analysis are dealt with. The study indicates, however, that the committees still deal somewhat differently with individual patient cases. Whether this variation is problematic can be discussed. Variation in how the CECs work may violate the principle of justice and variation in conclusions may indicate variations in quality, but decisions made by medical specialists may also vary. Implicit values and interpretations may influence medical decisions, which may be presented as value neutral, self-evident or based on unambiguous medical facts only. ²⁰ The very goal of an ethics case discussion is to identify explicit and implicit values in the solution of an ethical dilemma, and possible uncertainties inherent in clinical decision-making. These are, in our opinion, the most important justifications for ethics consultation services, more important than the CEC's final conclusion about what should be done. In the end, the physician is responsible for the final decision, and ethics consultation may make it possible to make a more transparent and well-founded decision.

Our study shows that, contrary to the manual's recommendation, many committees did not define the ethical problems of the case, although they did discuss the case systematically and competently. In the Norwegian CEC manual it is stressed that the CECs initially must assure that the case referred actually represents an ethical problem, and not mainly a legal or a medical one. It is important to pinpoint the most important values at stake, and to assess whether the case is better dealt with by others.

Some of the CECs did not come to any conclusions regarding second opinions, or regarding life-prolonging treatment. One explanation is that the case history did not explicitly ask for conclusions. The ones who did conclude, however, concluded somewhat differently. One obvious explanation for this variation is that the facts given can be interpreted differently.

The facts of a case

Ethical case discussions must be built on credible, well-founded facts, medical as well as psychosocial. Disagreements among specialists are morally relevant and should be made explicit. ²¹ If medical information is of low quality, termination of life-prolonging treatment may be morally problematic. An important quality for people involved in case consultations is an ability to question medical facts, to uncover uncertainties, inconsistencies and disagreements concerning medical facts among medical specialists in addition to identifying value disagreement. ¹⁰ Therefore, a committee should include members with medical knowledge who can identify situations in which more medical information needs to be sought before conclusions are made. Furthermore, it is favourable that the responsible clinicians and specialists, who can elucidate a case, discuss the case with the committee members.

Although most CECs regarded the patient's condition as irreversible, some CECs claimed that the prognosis was still uncertain, and that more testing needed to be done. Accordingly, conclusions, whether a second opinion should be given and whether treatment should be foregone, varied. The definition of second opinion varied, and whether a second opinion actually had been given, or should be given and the reason why it should/should not be given. Our findings underline the need to increase committee members’ knowledge of important concepts such as second opinion, futility, brain death and vegetative state. ¹²

The reports also show that the patient's possible suffering was dealt with differently by the CECs. Severe brain damage may result in the patient having little or no subjective experience of pain. However, if experiencing pain or suffering, no hope of recovery bears additional moral significance because the life-prolonging treatment is burdensome in addition to being futile. This is a finding which also needs to be emphasized in SMEs information to the CECs.

The role of the next of kin

To facilitate a good dialogue with the parents was regarded as a major challenge by a great majority of the committees, not only to protect the interests of the parents but also in order to reduce the time until futile treatment could be stopped.

The patient's or next of kin's voice is vital in the discussion of most ethical dilemmas. ^22,23 The insufficient information about the parents’ perspectives in the case description was stressed by many CECs. This is vital information for a good solution of the case. Although the manual recommends involvement of patients/next of kin in case discussions, only a minority of the Norwegian CECs actually have done this. ²⁴ This may be related to how the committees perceive their main objective: to help clinicians in ethically sound decision-making, rather than to safeguard the interests of patients in ethical dilemmas. ²⁵ However, it may also relate to a reluctance to communicate directly with the patient/next of kin, since this can make the case discussion even more complex and challenging. In our opinion, the voice of the patient – who often has to be represented by the next of kin – is of major importance when ethics case consultations are being used to promote sound clinical decision-making. In addition to giving relevant information, being included in the discussion may stress the parents’ central role in the case and increase the parents’ confidence in the discussion and the conclusions reached. ²⁶ Although emotionally demanding, having the next of kin present during the discussion when there is a conflict around life and death decisions, may give the CEC members new insight into the reasons for conflict and communication problems between staff and family. ^26–28 It is our impression that inclusion of the patient and/or the relatives in a CEC discussion can be positive if the committee has the necessary competence and experience, in particular the chairing person. Furthermore, the participating parties should be well prepared, and it should be stressed that the CECs’ role is only consultative, and that the very aim of the discussion is to elucidate important value issues. ²³

Conclusions

Our study indicates that the Norwegian attempt to strengthen the structure of clinical ethics consultations has been worthwhile. We have evaluated case discussions by means of a paper case sent to all Norwegian committees, and by scrutinizing the committees’ reports from the discussions. This appears to be a useful method to compare and explore CECs’ way of dealing with a case, and to identify possible shortcomings in the CEC deliberations. Our findings indicate that the CECs’ legal knowledge needs to be improved, and that patient suffering must be explored more systematically as an important foundation for an ethical discussion of end-of-life issues. The results further indicate that it is important to have a critical view of how the CECs deal with relevant facts, how the patient/next of kin are included in the discussion, and how important concepts such as futile treatment, second opinion and brain death are defined. We believe that these findings can contribute in improving the quality of the CECs’ case discussions, and be of help to the institutions that are responsible for quality assurance of the field of clinical ethics consultation.

The variation inherent in the case discussions indicates that these kinds of dilemmas can be handled in multiple ways. This is an important reminder of the importance of transparent and thorough decision-making processes. This probably applies not only to CECs but also to ordinary clinical practice, since the large majority of CEC-members participating in this study are first and foremost clinicians.