Wide variation in topics
The results indicate that the Norwegian CECs have worked with issues of priority setting and resource use in a variety of ways, identifying such issues in individual patient cases and principled/general cases referred for CEC deliberations, and bringing such issues up for reflection and debate among health professionals in the hospital in seminars. As some of the examples illustrate, clinical-ethical cases of this sort might be both important and highly complex. The issues have appeared more often in recent years; two possible explanations for this can be, first, that awareness of priority setting issues in the healthcare services has increased; second, that recent years might have seen some new kinds of dilemmas, as in case D.
The CEC as analyst, advisor and moderator
CEC members are trained in structured analysis of what is at stake in a clinical-ethical dilemma, emphasizing the values, moral principles and relevant law involved in the case. Dilemmas of priority setting and resource use ought to be no different than other clinical-ethical dilemmas in this regard, and the CEC can analyse and provide advice on such cases in light of priority setting criteria and relevant arguments from ethical debates in the field.
In addition, CECs emphasize process: as per the ideals of discourse ethics, CECs aim for stakeholder involvement in the deliberations, either directly (such as in case A) or by representative . The CEC may thus provide the kind of structured, transparent and open deliberation process that some argue is an essential prerequisite for legitimate priority setting decisions .
The CEC might constitute a well-suited forum for priority setting discussions because contributing knowledge of ethics, law and medicine, and being broadly constituted with different professions and user representation. Ideally, then, the CEC may play a role in moderating more just priority decisions; arguably, cases A-E exemplify this.
The CEC as disseminator
Several CECs arranged seminars on the 2014 governmental report on priority setting and the framework for priority setting suggested therein . Others seminars concerned priority dilemmas affecting specific patient groups or medical specialities. In such seminars, participants are exposed to priority setting frameworks and their rationale, as well as given a forum for discussing implications for their own practice. Through seminars the CEC therefore can bring awareness of priority setting issues and knowledge of arguments and principles to a greater number of clinicians.
In case discussions, once it is agreed that a dilemma concerns priority setting, the dilemma can be analyzed within corresponding ethical frameworks and with relevant ethical terms and priority criteria. The CEC might therefore have an important role in identifying that the dilemma at hand is a priority setting dilemma, as is illustrated in all the example cases (A-E). As health professionals do not necessarily have other forums for discussing priority dilemmas, the CEC may play a significant role in ensuring that priority setting and resource use is discussed by clinicians. This may lead to increased awareness of dilemmas, competence (e.g., knowledge of priority setting criteria and moral arguments) and openness in clinical priority setting.
The CEC as coordinator
Several of the cases (B, D, E) illustrate the CEC’s role as a coordinator or facilitator of communication between individual clinicians and clinical departments on the one hand, and hospital management and national institutions responsible for priority setting on the other. In these cases, the CEC helped identify and formulate the dilemmas and the values at stake before referring the case on. They thereby ensured that the dilemmas experienced at the clinical level were raised to a higher level. Case E also illustrates that concerns may not be taken sufficiently seriously in the hospital hierarchy when voiced by individual clinicians; the CEC, however, may be well positioned to highlight and speak up about problematic practices.
The CEC as watch dog and guardian
The CEC can act as a stakeholder advocate – a “watch dog”. In case B, the CEC advocated for the patient’s perspective in the appeal process with the responsible office on the national level. In case A, the CEC turned out to support the concerns of the health professionals, underpinning these with arguments rooted in priority setting criteria. The CEC’s watch dog role can be important in promoting more just decisions; especially, arguably, in ensuring that patients’ right to healthcare is met. Cases B and C illustrate the CEC supporting groups that may be relatively neglected in the health services (here, patients with chronic psychosis and intravenous drug abuse, respectively). The CEC’s verdict and any advocacy, however, must be based on close weighing of the moral and medical arguments .
Relatedly, in our material there were also several examples of the CEC acting as a guardian of societal values. The CEC would sometimes interpret a case and a proposed line of action as presenting a challenge to commonly accepted values and moral principles. The CEC would then have a role in upholding such values, arguing that the courses of action that best protect these should be preferred. Case D is an example of this, where the principle of equality of access was highlighted and argued to be an overriding concern. The watch dog and guardian roles may also come into conflict, when, for instance, the health care needs of a patient or a patient group is pitted against tenets of professional ethics or priority setting guidelines.
There are some examples of CECs being willing to take potentially “unpopular” stances such as recommending against offering treatment for individual patients or patient groups; cases A and D are examples of this. In our findings, there are also some examples of the CEC criticizing departments or hospital management (e.g., case E).
Are the CECs equipped to handle issues of priority setting?
In our estimation, cases A-E show the efforts of CECs being of some help in a set of priority setting dilemmas; evidently, then, CECs can be helpful in priority setting issues. However, our investigation was not suited to directly assess the quality of the CECs’ work with issues of prioritization. Thus, we cannot say whether the CECs actually were of help in the remainder of the cases identified in the study, or indeed whether they sometimes did more harm than good. The field of priority setting in healthcare is complex and requires the CEC to be familiar with priority setting criteria and specialized ethical debates, as several of the examples illustrate. Case B, for instance, saw the CEC weighing and adapting general principles (i.e., national priority setting criteria) to fit the complexities of an individual patient’s situation in a fair manner. Most likely such knowledge, some of which within the ambit of political philosophy, is not as widespread among CEC members as is knowledge of other aspects of clinical ethics.
There is a need, then, for the CEC to acquire specialized knowledge, for instance through tailored courses in the ethics of priority setting, or by recruiting at least one member with such knowledge. Seeing as how clinical-ethical cases appear more likely to occur at university hospitals, a case could be made that the most difficult clinical-ethical cases concerning priority setting should be handled mainly in university hospital CECs, at least at the present stage. Such CECs typically have professional ethicists among their members. However, it is not ideal to remove discussion from the hospitals in which the cases will have to be handled. It is also vital that the local stakeholders are able to participate in the CEC discussions. Furthermore, CECs in smaller hospitals have an equally important responsibility in inducing awareness of priority setting issues amongst local clinicians; this task cannot be transferred to university hospital CECs.
What authority should the CECs have in such cases? In Norway, as in many other countries, CECs have no decision-making authority. The CEC will analyse the case and provide advice if this is requested; it is then up to the clinician whether and how to use the CEC’s advice.
If a critic were to question the democratic legitimacy of a CEC’s handling of priority setting dilemmas then this would be part of our answer: the CEC does not make decisions; it only attempts to illuminate the case and provide advice. However, because only the most general priority setting decisions can be made at the legislative level, there is a need for agents “downstream” to carry on the responsibility of fair priority setting . Increased transparency is called for in priority setting ; CECs promote transparency through presenting the relevant arguments in written case reports available to the stakeholders and sometimes to larger audiences. Arguably, therefore, a CEC deliberation, through being structured, transparent and open to diverse stakeholder perspectives, is able to confer not only moral but some political legitimacy on the conclusion reached.
Strengths and limitations
The study’s strength is that it is a systematic investigation of the activities of all Norwegian CECs. The limitation is that some of the CEC yearly reports are brief and selective, without detailing topics and dilemmas, sometimes describing activities by title only. For this reason, it is likely that some relevant activities have been missed. In addition, the yearly reports and the case reports are the CEC’s own descriptions; possibly, the CEC’s roles and impact would appear in a different light if the experiences of the other stakeholders had also been consulted. From previous research and from our experience we contend that priority setting and resource use often figure as relevant considerations in CEC cases without necessarily being treated as the dominant or decisive issues . Such issues, then, are likely to have been addressed in many more CEC cases than the ones identified in the study. One set of examples would be cases concerning the limitation of life-prolonging treatment for severely ill or dying patients, cases commonly addressed by CECs.