Table 5 Quality reporting

Overall Perception of CEC Experience

Positive Experience, Negative Experience

Qualitative Interviews

12 doctors reported positive experiences of the CEC discussion; 3 doctors reported negative experiences. Positive experience was described as related to ability to scrutinize problem from an interdisciplinary perspective, easier to reach a decision after CEC discussion, CEC discussion made decision making process more well founded, got more moral and legal backing for their final decision, and viewed CEC as an important contribution to quality of their decision and increased acceptance of their decisions by disagreeing minority within the medical team. Negative experiences related to lack of systematic structure in discussion, lack of ability to scrutinize the ethical problem or add new perspectives; had to wait too long before CEC could discuss the case

[49]

Satisfaction

Level of agreement between nurses’ retrospective responses to the questionnaire and reason why CECS was involved

Mixed methods (Retrospective CES documentation review and questionnaire, including Likert-scale and open-ended/free text questions)

"The close correlation from nurses' retrospective responses seems to indicate, at the very least, that a fairly high percentage of those requesting CEC were satisfied with the service provided…"

[51]

Satisfaction

Satisfaction regarding 6 aspects: Usefulness for decision-making, contribution to better perceive ethical aspects, support to doctors, benefit for patients, support to relatives, opportunity to request ethical consultations

Survey (Likert-scale survey “total disagreement” to “total agreement”)

Consultancy was considered useful for making complex decisions (6.3/7), support for doctors (6.5), improves ability to perceive ethical aspects (6.0), benefit to patient (6.3), support for family (6.7), request occurred in timely manner (5.2)

[52]

Satisfaction

Satisfaction regarding service quality (e.g., clarification of goals of care, improved understanding, timeliness, accessibility, clarification of questions)

Mixed methods (5-point Likert scale "strongly disagree" to "strongly agree"; free-text comments/feedback)

86–92% of respondents responded positively (agreement or strong agreement) to outcome-related questions; qualitative themes that came from free input: (1) timeliness and accessibility of the CEC; (2) clarification of the patient's goals for care; (3) helpfulness of the CEC to staff and family members; (4) appreciation for the professionalism and compassion of the ethics consultants

[53]

Usefulness and Satisfaction

Value in terms of helpful, informative, supportive, fair, respectful of personal values

Would seek out further CEC in similar situations, would recommend CEC to others, educational value

Survey (Likert Scale “strongly disagree to “strongly agree”)

Healthcare providers and family members found the CEC helpful (92.3%, 87.0%); informative (81.1%, 88.0%); supportive (93.3%, 88.0); fair (92.9%, 84.3%); and respectful of personal values (92.4%, 85.1%). 73% of healthcare providers and 71.2% of family members did not find the CEC stressful

Majority of clinical caregivers and family members would seek out further CEC in similar situations (95.2%, 80.4%); and recommend CEC to others (98.0%, 80.4%). Healthcare providers and family members strongly valued the problem-solving component of CEC. There were no statistical differences between healthcare providers and family members in beliefs concerning the educational value of CEC

[55]

Usefulness

Helpfulness or satisfaction with process and decision

Mixed methods (Survey and open-ended questions/free text)

Almost all respondents stated they had an accurate understanding of the purpose of the HEC before the consultation began. Most staff members felt that the HEC was a valuable experience that would help them to some degree in their clinical practice. The two who felt it unhelpful were physicians. One stated each case is unique and would not have future applicability. Four of the six family members were very satisfied and two were very dissatisfied with the process. The two very dissatisfied family members were also the same individuals who disagreed with the Committee's opinion. Most staff members (23/32) were "very satisfied" with the process of the consultation. 7 were somewhat satisfied and 4 were somewhat dissatisfied. Of the 9 who were less than "very satisfied" only one disagreed with the final opinion of the HEC

[57]

Usefulness

Perceived benefit/utility of service

Mixed methods (Survey and open ended questions)

Quantitative:

Q3. CECS involvement helped to (mark as many responses as appropriate):

68%—Enhance efforts to provide support to providers, patients and family

63.5%—Identify and verbalize moral concerns

63.5%—Facilitate solving real or potential problems

56%—Mediate between interests

51%—Strengthen decision-making processes

46%—Support providers, patient and family through hospital stresses and griefs

44%—Serve as an advocate for patient and family

23%—Interpret medical information given to patients and family

Q4. Likert scale rating (1–5, Detrimental to Beneficial) of CECS overall effectiveness:

65%—5 (Beneficial)

22%—4

12%—3 (Neutral)

1%—2

0%—1 (Detrimental)

Q7. Would welcome CECS participation in future: 94%—Yes

5%—Unsure 1%—No

Qualitative: large data set, see study

[61]

Usefulness

Perceived benefit of service

Qualitative (open-ended questions)

Overall positive responses and helpfulness of service

[63]

Satisfaction

Satisfaction with service/future recommendation of CECS service

Survey

97% of respondents found the CECS deliberation to be at least somewhat helpful/very helpful

97% of respondents would recommend the service to colleagues

[66]

Usefulness

To what extent the MCD was regarded as useful

Mixed methods (Survey, open ended questions, interviews and focus groups)

Organization of MCD

There was ample time/space in my working schedule for participating in MCD

I was informed on MCD in time

We have prepared this MCD meeting as a team

Content of MCD

I felt appealed to the case at hand in the MCD

The discussion was relevant for our practice

The way of discussing with one another was constructive

Everyone had an equal share in the conversation

In this MCD, I had enough opportunity to say what was on my mind

It was good to analyse our reflections on the theme in an interrogative way

The MCD facilitator

The facilitator saw to it that everyone got his or her share during the MCD

Atmosphere during MCD

In the MCD, I could talk freely I felt safe during the MCD

MCD: moral case deliberation

Answers on 5-point Likert scale (1 1⁄4 totally disagree and 5 1⁄4 totally agree)

Table 2. List of open questions addressed to all MCD participants

How can this MCD be improved?

What issues would you like to address in a future MCD? What has MCD brought to the team?

What has MCD brought to you personally?

What should, after this MCD, happen in practice?

Do you have other general/supplemental remarks?

MCD: moral case deliberation

Mean score of caregivers (standard deviation within parentheses) (N 1⁄4 450)a

3.71 (s1.23) 4.24 (s1.17) 4.41 (s1.06) 2.46 (s1.46) 4.44 (s0.91) 4.48 (s0.84) 4.58 (s0.80) 4.51 (s0.78) 4.25 (s1.04) 4.47 (s0.96) 4.36 (s0.98)

4.53 (s0.78) 4.62 (s0.77) 4.62 (s0.77) 4.62 (s0.76)

[67]

Usefulness

Perceived helpfulness in patient care and physician education; indication of whether they would request future ethics consultation

Survey

86% respondents found consultation to be "very helpful" or helpful" in 1 or more aspects of patient care; 86% found it "very helpful" or "helpful" in 1 or more aspects of physician education; 97% would request an ethics consultation in the future

[68]

Usefulness

Perceived helpfulness in patient care and physician education; indication of whether they would request future ethics consultation

Survey

71% physicians stated consultation was "very important" in patient management, in clarifying ethical issues, or in learning about medical ethics; 96% would request ethics consultation in the future

[69]

Ability to Better Practice

Better handling of ethical challenges, better employee cooperation, better service quality, better relations to patients/users/next of kin, better work environment

Survey

41% to a large degree and 52% to some degree believed ethics activities led to better handling of ethical issues

24% to a large degree and 59% to some degree believed ethics activities led to better employee cooperation

24% to a large degree and 60% to some degree believed ethics activities led to better service quality

22% to a large degree and 54% to some degree believed ethics activities led to better relations to patients/users/ next of kin

21% to a large degree and 53% to a large degree believed ethics activities led to a better work environment

[72]

Usefulness

Attitudes regarding the overall helpfulness of the consult: helpful in the medical treatment of the patient; providing emotional support to patient/family; clarifying ethical issue; improving communication (patient/family and physician); improving communication (patient and family); mediating disputes; overall helpfulness

Survey

96% of physicians and 95% of nurses felt the consult was of at least some assistance, only 65% of patients or families thought the intervention was beneficial; 83% of physicians and 90% of nurses’ responses positively about the effects of the consult on medical management, while only 59% of patients or families saw medical benefit; 96% of physicians and 100% of nurses felt the consult was helpful in clarifying ethical issues, while only 65% of patients and families believed it was helpful

[74]

Usefulness

Would the respondent request an ethics consultation in the future

Survey

100% of respondent attending physicians would request an ethics consultation in the future

[77]

Usefulness

Was the ethics consultation helpful or detrimental to the family

Survey (Likert-scale)

70% agreement or strong agreement among family members that the CEC helped to identify (8/8), analyze (6/8), resolve (6/8), educate (6/8), was responsive to personal values (7/8), helped to educate others about ethical issues (6/8), was helpful (6/8), informative (6/8), supportive (7/8), and fair (6/8). Three of the 8 family members thought the CEC was stressful (40%). All but 1 physician agreed or strongly agreed with the positive process measures

[81]

Experience of Ethics Rounds

Helpfulness/perceived benefit of ethics rounds, role of philosopher/ethicist/moderator of rounds, improvement suggestions

Qualitative interviews

Improved personal ethical reflection (new perspectives, being more thoughtful, thinking about gray areas, etc.); feeling heard/not judged; however, not experiencing actual changes in daily work

[83]

Perceived Benefit

Reduction in ICU days and treatments in patients who did not survive hospitalization would be achieved through interventions (CEC?) that are viewed as beneficial by all involved parties: CEC assessed in terms of helpfulness, would seek CEC again, would recommend CEC to others; agreement with CEC recommendations

Survey (5-point Likert scale: strongly disagree, disagree, neutral, agree, strongly agree)

87% of nurses and physicians and patients/surrogates agreed or strongly agreed that CEC were helpful. More than 90% of nurses and physicians agreed or strongly agreed that they would seek them again and recommend them to others. Even though patients/surrogates found CEC somewhat more stressful than nurses/physicians, 80% agreed or strongly agreed that they would seek them again or recommend them to others. 13 surrogates disagreed or strongly disagreed with CEC recommendations, yet 7 would seek them again or recommend them to others

[82]

Usefulness

Extent to which the Department of Bioethics was found to be helpful by those who used their services

Survey (3-point Likert scale: (1) very helpful, (2) somewhat helpful, (3) not at all helpful)

46% of respondents had used the Department of Bioethics [responsible for ethics consultation]. 96% of those who called upon the DB found the experience to be either very helpful (64%) or somewhat helpful (32%). 25% of respondents had used the Ethics Committee. Of those who had, 97% found the experience to be either very helpful (53%) or somewhat helpful (44%). 92% of those who used the EC did so to assist a particular patient

[84]

Effectiveness

Effectiveness of the CES involvement in the case consultation

Survey (Likert-scale: beneficial, neutral, detrimental)

88% of ethicists and 83% of nurses reported ethics service involvement as "beneficial", whereas 65% of physicians reported as beneficial. Only a few respondents found it to be detrimental (3% of nurses, 4% of physicians)

[87]

Satisfaction

Satisfaction with intervention

Survey (5-item Likert scale)

Statistically significant differences in scores could not be shown from year to year. However, there are trends. In 1993 the lowest satisfaction scores (average 3.7) were given in the category of shared decision making. In 1994 and 1995 these scores increased (3.8 and 4.5) with efforts to address the low scores seen previously. In 1994 the lowest satisfaction scores were for increased knowledge of ethics issues with the consultation (average 3.3) and documentation adequacy (3.8)

[47]

Satisfaction

Positive experience, usefulness, would recommend/use again

Qualitative Interviews

Most clinicians found the consultation useful even those who had critical commentary, reporting an overall good experience. Many emphasized they would use the consultation service again or that it should be made more available/well known. Interviewers experience the case consultation positively, frequently due to the dilemmas being analyzed systematically and thoroughly. In consultations where there was no clear solution or advice, clinicians gave positive evaluations due to thoroughness of the discussion, and others reporting that the committee appreciated her own concerns and treated them seriously. Conclusion allowed clinicians to see the patient's wishes and values more clearly, gave the patient's relatives a feeling of being taken seriously, and that it was useful given its wider or more general impact not limited to the particular decision of the consultation having subsequent departmental impact

[62]

Overall Experience of Facilitator and Usefulness

Satisfaction/perception of facilitator and the experience 6 central qualities including (1) introduction and explanation, (2) ordering session, (3) listening and understanding, (4) critical reflection, (5) encouraging, (6) expertise

The extent to which goals are met during the moral case deliberation

Survey (Likert-Scale)

(1) Introduction and Explanation = 7.8

(2) Ordering Session = 7.6

(3) Listening and Understanding = 7.9

(4) Critical Reflection = 7.5

(5) Encouraging = 7.6

(6) Expertise = 7.8

(1) to get knowledge of and insight in moral issues = 8.1

(2) to influence my attitude with respect to the case = 7.3

(3) to influence my behaviour with respect to the case = 7.1

(4) to improve my skills in dealing with moral issues = 7.5

(5) to deliver an answer or solution to the moral problem = 6.4

(6) to reach consensus within the group = 6.2

(7) to pay attention to reasons and arguments = 8.0

(8) to pay attention to feelings = 7.9

(9) to improve mutual understanding = 8.0

(10) to improve mutual cooperation = 7.9

(11) to active my job motivation = 9.7

(12) to frees my mind = 6.7

(13) to make me a better professional = 7.3

(14) to improve quality of care indirectly = 7.7

(15) to better ground decisions and reflect more on them = 7.7

[76]

Usefulness

Helpfulness of the consultation to the recipients

Survey (Likert-scale)

Over 90% of physicians or social workers agreed or strongly agreed that the CEC were helpful, informative, and supportive. Only 30% agreed or strongly agreed that the CEC was stressful. Of the 4 family interviews, half agreed or strongly agreed that the CEC was helpful and informative. 3 of 4 families strongly agreed the CEC was stressful. 2 of 4 families strongly disagreed that the CEC was supportive. Over 90% of physicians and social workers would recommend a CEC to others in similar circumstances. Only 2 of 4 families would recommend a CEC to others

[91]

Practical Implications

How did the participants appreciate the consultation, were the results helpful, were the consequences practical

Qualitative interviews

Team conflicts influenced consultation and implementation on the ward—during the consultation, conflicts were seen to be uncovered but not solved and moving forward were seen as essential to transferring results to wards. Overall, the hierarchical symmetry was seen as a barrier to development and implementation of solutions. Positively, ethics consultation can give impulse for changing communication within the team, and solutions directly relevant to a specific conflict lead to greater satisfaction with ethics consultation and CEC members especially when they reflect one's own opinion. Overall, while there is existing ambiguity following ethics consultation, with participants reporting that they remained unclear on the solution and that reporting instrument was insufficient to avoid misinterpretation and communication, most participants felt discussion was useful for solving ethical conflict, revealing underlying team conflict, and to contact the CEC in case of further ethical conflict

[80]

Usefulness

Was the ethics consultation helpful/was it helpful or detrimental to the family

Survey (Likert-scale)

Very Helpful = 23

Somewhat Helpful = 9

Neither Helpful Nor Detrimental = 21

Somewhat Detrimental = 0

Very Detrimental = 2

No Response = 1

[78]

Satisfaction

Providers’ impression of the intervention

Survey (5-item Likert scale)

Large data set. Refer to study

[89]

Satisfaction

Overall satisfaction with hospital experience

Survey (5-item Likert scale)

Respondents in both arms had generally positive perceptions with no significant difference between them

Intervention 86.1% nurses and physicians reported that patients were "somewhat satisfied" or "very satisfied" compared to 74/8% of patients/surrogates the same

Control arm, figures for the same were 81.4% and 83.6%

Nurses and physicians in the intervention arm report that 65.6% of patients had "little suffering" or were "free of suffering" with 52.6% of patients/surrogates reporting the same

Control arm: 58.9% and 57.9% respectively

[48]

Satisfaction and Usefulness and Experience with Patient/Next of Kin Involvement in Consultation

Clinician satisfaction with consultation

Clinicians’ reasons provided for requests (broad discussion, better equipped for future situations, advice, external perspective, support, learning, clarifying values, disagreement among professionals, disagreement with family/next of kin/patient, improve cooperation) and the perceived usefulness of the consultation in that respect

Characterization and importance/usefulness of patient/next of kin involvement in consultation process (positive, unproblematic, new/important information, problematic, difficulty clarifying, conflicts)

Survey (Likert scale)

Survey (Likert scale)

Survey (tick-boxes)

Mean Likert score per question:

(1) meeting stakeholders with respect = 4.96

(2) overall positive experience = 4.82

(3) felt listened to = 4.81

(4) received sufficient information = 4.68

(5) would recommend CEC = 4.85

(6) was allowed to make important contributions = 4.77

(7) learning about ethical dilemmas = 4.44

(8) increased knowledge in navigating ethical conflict = 4.33

(9) overall new information = 3.98

(10) changes in opinion = 2.46

Proportion who disagree somewhat/strongly:

(1) meeting stakeholders with respect = 0/53

(2) overall positive experience = 1/51

(3) felt listened to = 0/53

(4) received sufficient information = 1/53

(5) would recommend CEC = 2/53

(6) was allowed to make important contributions = 1/53

(7) learning about ethical dilemmas = 3/52

(8) increased knowledge in navigating ethical conflict = 1/52

(9) overall new information = 6/52

(10) changes in opinion = 21/52

CEC mean Likert score:

(1) meeting stakeholders with respect = 4.90

(2) overall positive experience = 4.64

(3) felt listened to = 4.89

(4) received sufficient information = 4.68

Indicated by proportion of clinicians (% (N)):

(1) broadening discussions = 93% (42)

(2) better equipping for future similar situations = 67% (30)

(3) getting an external perspective = 62% (28)

(4) getting advice about a decision = 64% (29)

(5) getting support for decisions = 60% (27)

(6) learn from a difficult case = 58% (26)

(7) clarifying values = 44% (20)

(8) disagreements among professionals = 31% (14)

(9) disagreements between professionals: 27% (12)

(9) improving cooperation = 22% (10)

Average score for usefulness:

(1) broadening discussions = 4.50

(2) better equipping for future similar situations = 4.40

(3) getting an external perspective = 4.69

(4) getting advice about a decision = 4.32

(5) getting support for decisions = 4.78

(6) learn from a difficult case = 4.40

(7) clarifying values = 4.70

(8) disagreements among professionals = 3.50

(9) disagreements between professionals: 4.33

(9) improving cooperation = 4.00

CEC Respondents (N = 16)

(1) Positive = 15

(2) Unproblematic = 10

(3) New and important information was revealed = 6

(4) Problematic because it was difficult to speak freely = 1

(5) Difficult to clarify medical/professional information well enough = 1

(6) Conflicts inhibited the ethical discussion = 2

Clinicians (N = 17)

(1) Positive = 14

(2) Unproblematic = 5

(3) New and important information was revealed = 3

(4) Problematic because it was difficult to speak freely = 3

(5) Difficult to clarify medical/professional information well enough = 2

(6) Conflicts inhibited the ethical discussion = 0

[73]

Satisfaction

Degree to which service meets expectations and need (themes described: responsiveness, willingness to consult, institutional role, and areas for improvement)

Qualitative interviews

Responsiveness of the Ethics Consultant

Participants felt that ethics consultant was respectful, responsive, accessible, and approachable. Amount of time spent on consult was sufficient to help address the ethical concerns

Willingness to Consult

Willing to consult ethics service again; ethics service fills a gap in case and knowledge that otherwise wouldn't be filled. Differed on timing of when they would consult service again. Most participants comfortable with the outcome; even when medical outcome poor, service seen to empower clinical and ethical decision-making, promote patient safety, honour patient wishes, and facilitate team communication and cohesion

Institutional Role

Participants held varying opinions. Respondents mentioned ES had a role in advocating for patients and connecting team to institutional resources, while others commented on interface between legal and regulatory system offered by ethics service. One commented on bad reputation of ethics service as implying "bad behaviour" or as a means of "policing healthcare professionals' decisions"

Identifying Areas for Improvement

Most did not have recommendations; however, comments were made about making ethics service better known. Other suggestions involved involving members of the care team during discussions

[94]

Experience of the MCD

Promoting carefully considered decisions, giving a better explanation and justification for some decisions, which leads to quality

Qualitative interviews and focus groups

Participants reported the MCD promoted carefully considered decisions, giving a better explanation and justification for some decisions, which leads to quality

[93]