CECs 1&2 were in operation from M1, CEC 3 from M2, whereas CEC 4 began in M17. In all four municipalities the CECs were placed high in the organizational hierarchy: either directly under the leader for the health and care services (CECs 2&3), in the section for health and welfare (CEC 1), or directly under the municipal commissioner who leads the municipal bureaucracy (CEC 4).
At M24, the number of members of each CEC ranged from seven (CEC 2) to 13 (CEC 4). All committees had at least one physician, nurse, and lay member. Other health professions represented were nurses’ aides (2 CECs), social worker (2), psychologist (1), school health nurse (1), and physiotherapist (1). Two CECs had a municipal lawyer, whereas one CEC invited a lawyer when required. One CEC had an academic ethicist. Clergy were members of three CECs, whereas two CECs had municipal mid-level managers as members. Two CECs were led by physicians, one by a physiotherapist and one by a palliative nurse with responsibility for coordination of palliative services.
Characteristics of Case Deliberations and Ethical Issues Involved
The four CECs discussed 54 cases in total in the study period (CEC 1&2: 19 each; CEC 3: 10; CEC 4: 6). CEC 1 received the bulk of their cases (12 of 19) in year 2; CEC 2 in year 1 (10 of 19). Of the 54 cases, 39 were prospective cases concerning individual patients. A further 4 cases were retrospective, whereas 11 cases concerned general or principled issues (i.e., not connected to specific individuals). Table 1 summarizes the main ethical issues discussed.
Patient Autonomy, Competence and Coercion
In a large subset of cases, issues of patient autonomy, competence and coercion were central—and intertwined. Patients typically either lacked competence to consent or their competence was put in question; many had a diagnosis of dementia or serious chronic mental illness. The use of coercion then often became a potential line of action if patient preferences collided with staff’s perception of the patient’s best interests. In some cases, it was asked whether the patient who refuses help has "a right to perish" or whether professionals should arrange for, e.g., forced admission to a nursing home. In other cases, there was a question of when, how and to what extent professionals might reasonably set limits to patients’ freedom—when it comes to freedom of movement, sexual relations, and smoking or potentially dangerous activities. Thus, autonomy and freedom versus safety and security was a recurring value conflict. Another issue was coercion in personal hygiene; yet another issue was how to handle that some patients might be indirectly affected by coercive measures for other patients.
Issues of professionalism and the role and responsibilities of the professional were brought up in several cases. Some cases concerned moral distress and how far the professional should go to exercise good care. For instance, several cases from home care concerned difficult or unacceptable working environments—physically, or psychologically due, e.g., to threats and verbal abuse. How much should professionals be expected to tolerate? Would they be justified in limiting or refraining from providing care altogether? Professionalism was also addressed in a case concerning whether professionals might justifiably develop friendly relations with patients, and in a case about responsibility to minimize risk of Covid-19 infection in refraining from activities in one’s spare time. Some cases also concerned alleged insufficient competence and quality of care among colleagues and what to do about it.
Cooperation and Disagreement with Next of Kin
In several cases, next of kin (or legal guardians) played a central role. Sometimes professionals and next of kin disagreed on decisions about care, such as the medications or level of care the patient should receive. Sometimes cooperation was difficult. Some professionals observed violent or otherwise harmful or unhealthy relations between patients and next of kin and wondered whether and how they could intervene. As next of kin played important roles as informal carers, professionals would sometimes need guidance on setting limits to next of kin’s involvement in care.
Priority Setting, Resource Use and Quality
Some cases addressed fair use of resources and concerns about quality of care. Cases could involve uncertainty about proper level of services; for instance, should the patient be admitted to a nursing home? Ought dying patients to have a member of staff allocated to them at all times? In some cases, there was disagreement between different services in the municipality or between municipal services and the local hospital. Whether and how next of kin’s needs and preferences should be taken into account in resource allocation was also discussed. Furthermore, priority setting and resource use was brought up as an additional element in several other cases where other issues took centre stage.
Decision-Making and Care at the End of Life
Some cases concerned the level of treatment to provide at the last stages of life. How should such decisions be made for a patient who refuses to participate in decision-making? Should artificial nutrition and hydration be instigated for a patient without competence to consent who has stopped eating and drinking? Several cases involved disagreement with next kin who for instance would insist on artificial nutrition or claim that the patient received too aggressive pain medication.
Interests of the One vs. Interests of the Many
The Covid-19 pandemic raised issues of infection control where the interests of the one must be balanced with the interests of others. For instance, restrictions on visits and freedom of movement became important issues to address in nursing homes and sheltered housing where patients live together. However, the topic was also relevant outside of the context of the pandemic. Coercive measures for some patients could lead to negative effects for other patients on the ward; how were interests to be balanced? When patients were violent or acted out, their interests must be balanced with the safety of other patients and staff.
Information and Confidentiality; Encounters Between Cultures
In two cases professionals and next of kin disagreed about how much information should be given to patients lacking competence to consent. A further case concerned disagreement about care being provided to a patient by a carer of the opposite sex, something which next of kin found unacceptable. Here, cultural differences were found to play a role in the conflict.
Professional, Practical or Ethical Issues?
Most cases discussed in the CECs were complex, and from the case reports we see how the CECs typically has taken care to identify issues that are genuinely ethical from ‘within’ the full situation as presented to them. In the most complex cases, professional, practical and ethical issues were clearly intertwined; in five cases of this kind an ethical issue was not sharply demarcated or formulated in the case report.
How Case Deliberations Took Place
For the 50 case deliberations where we have sufficient information, the full CEC participated in 36, whereas in 14 cases two to four CEC members were present. There were no instances of consultations performed by a single CEC member only.
The CECs produced a full-text case report in 30 cases, whereas they wrote a simplified report with keywords in 23 cases. The latter format was especially practiced by CEC 2 (13 of 19 cases). In one case, no report was written.
We have complete or partial data from the CECs’ self-evaluation reports in 33 of 54 cases. The general impression is that the CECs typically were satisfied with how the case consultations went, with the highest self-assessment scores towards the end of the study period. When stakeholders (i.e., staff and next of kin) were present, the CECs rated highly the way they included and cared for them. The CECs reported that they sometimes lacked competence required in a case, and then most often specified this as knowledge of relevant law. Case deliberations lasted on average 81 minutes (range 50–120).
Professionals and Services Involved in Case Deliberations
Notably, many cases were referred from mid-level managers or from CEC members; relatively few originated from staff directly involved in patient care (Table 2). Not a single case was referred from physicians who were not themselves CEC members.
Half of all cases involved nursing homes, whereas many also involved home care services (Table 3). Several important municipal services were not involved in any of the CEC cases. These services include school health services, general practitioners, emergency rooms, and child and adolescent health centres.
Professionals from the relevant department(s) participated in 43 case deliberations, whereas in five they were not invited. For the remaining six deliberations we lack information. Next of kin took part in 10 case deliberations (5 each in CEC 1&2). In one further case, they declined participation. In a further 27 cases where next of kin were involved, they were not invited. However, case reports show that in several of the cases the CEC has suggested that next of kin be invited, but staff members with whom the case originated have not wanted this. Patients were not present at any case deliberation.
In addition to case consultations, the CECs also undertook other activities, examples of which are given in Table 4.