Is the discussion of patient cases in clin­ical ethics-committees useful?

Guro Kal­ager, Rei­dun Før­de, Rei­dar Pe­der­sen About the authors
Artikkel

Clin­ical ethics committees have an in­ter-disciplinary com­pos­ition. The members possess clin­ical expertise and ethics competency (1). Such committees can be found in the US and in most Eu­ro­pean countries. In 2003 the Min­is­try of Health and Social Affairs ­decided that all health en­ter­pri­ses should have an ethics committee. As of 1 January 2009, altogether 37 such committees had been es­tab­lished in Nor­way.

The work of the committee is to raise competence in clin­ical ethics and to promote a thorough and sys­tem­atic treat­ment of eth­ical is­su­es (1). The committee has no po­wers of de­ci­sion but is intended to function as a form of sup­port in de­ci­sion-making and as a fo­rum for clinicians and other affected parties in the discussion of concrete eth­ical prob­lems, whether pro­spect­ive or retro­spect­ive (1).

The Cent­re for Me­di­cal Ethics at the Uni­ver­si­ty of Oslo has been given responsibility for the na­tional coordination of the com­mittee work and for pro­fes­sional de­vel­op­ment. Qual­ity assurance of the work is cru­cial if the committees are to play a role in gra­ve decisions. Na­tio­nal guide­lines for de­ci­sion-making pro­cesses for limiting the life-prolonging treat­ment of seriously ill and dying pa­tients recommend the use of ethics committees in specially challenging cases (2).

In 2004 a qual­ity assurance pro­ject was conducted in which interviews were carried out with committee members and healthcare professionals who had referred a patient case to an ethics committee (3 – 6). All the clinicians ex­pressed the view that this had been meaningful but sev­eral of them stated that the threshold for seeking advice was high. In some cases such a referral was seen as disloyalty towards colleagues (4). The clinicians valued the sys­tem­atic and thorough deliberations. It is a common pro­blem, not only in Nor­way, that the threshold for discussing a case in an ethics committee is high and the committees are often lit­tle known among clinicians (7). In 2007, the Cent­re for Me­di­cal Ethics compiled a ma­nu­al for the qual­ity assurance and standardization of committee work (8). A number of dif­fe­rent sources (9 – 11) have called for assessment. It is prob­ably most im­port­ant to assess the discussion of eth­ical di­lem­mas linked to the treat­ment of individual pa­tients. In this study we have in­ves­ti­gated whether clini­cians who have made use of the ethics committees to discuss individual cases found this rele­vant and useful. In addition, we have exam­ined the type of cases reviewed and how they were dealt with.

Ma­ter­ials and methods

In May 2008 the Cent­re for Me­di­cal Ethics ­requested all ethics committees in Nor­way to pass on a ques­tion­naire to all clinicians who had submitted cases to a committee from and including 2007. The survey was an­onym­ous and clinicians were to be able to answer the questions with­out fearing that critical an­swers would be sent on to the local ethics committee or colleagues. Critical comments and in­put were regarded as being of spe­ci­al value. The ques­tion­naire was ­returned directly to the Cent­re for Me­di­cal Ethics. To acquire an overview of the ­response rate each ethics committee was ­asked to re­port how many ­questionnaires it had distributed.

The form contained 27 questions, inclu­ding why the ethics committee had been contacted (table 1), what eth­ical prob­lems were in fo­cus, how long it took before the case was discussed and what the outcome of the consultation had been. Moreover, a number of questions were asked about the usefulness of the ethics committee’s consulta­tion. Some of the questions were open questions, and some had space for comments.

Table 1  Reasons why clinicians (n = 43) contacted ethics committees and their evalu­ation of how useful the consultation had been based on the rea­son why they contacted the committee (1 = not useful, 5 = very useful)

Rea­son for contacting the committee

How useful was the consultation (Scale from 1 – 5)?

Number (%)

Number (score)

To have a broader discussion of the case

30 (70)

25 (4.1)

To clarify the eth­ical chal­len­ges

26 (61)

20 (3.7)

To get an «external perspective»

25 (58)

18 (4.1)

To be better equipped to deal with such cases in the fu­tu­re

25 (58)

19 (4.1)

To get advice on the de­ci­sion

22 (51)

20 (4.1)

To learn from a difficult case

21 (49)

16 (3.9)

To get sup­port for one’s own de­ci­sion

16 (37)

15 (3.4)

To clarify the va­lues that were at risk

10 (23)

 7 (3.7)

To improve co­oper­ation

 9 (21)

 3 (2.0)

To sha­re the responsibility

 7 (16)

 4 (3.5)

Be­cause the case involved conflict

 5 (12)

 4 (3.3)

To create agree­ment

4 (9)

 2 (4.0)

To learn more about ethics

4 (9)

 4 (3.3)

Be­cause the case was deadlocked

4 (9)

 4 (3.3)

Other

 5 (12)

 3 (3.3)

The form was designed on the basis of the 2004 survey and on inter­national experiences (12).

Results

Twenty ethics committees had passed on 86 questionnaires. Of these, 43 were returned to the Cent­re for Me­di­cal Ethics (50 %). Not all questions were answered on all the forms.

Who contacts the ethics committees?

Twenty-three (54 %) of those who had referred cases to the committee were phys­icians, 15 (35 %) were nurses and two (5 %) were psychologists. Three peop­le (7 %) had a dif­fer­ent profession. The committee members themselves had ini­ti­ated two (5 %) of the consultations.

Table 2 pro­vides an overview of the ­departments to which the pa­tients belonged – the psy­chi­atric de­part­ment, the me­di­cal/neurological de­part­ment and the in­ten­si­ve care ward were those most often represented. Fifty-one percent of the cases were discussed before a de­ci­sion had been made (pro­spect­ive) and 49 % were discussed ­afterwards (retro­spect­ive).

Table 2  The de­part­ment to which the patient discussed by the committee belonged (n = 43)?

Number (%)

Psy­chi­atric de­part­ment

12 (28)

Me­di­cal/neurological de­part­ment

10 (23)

In­ten­si­ve care ward

 6 (14)

Gynaecological, surgical or oncological de­part­ment

 6 (14)

Neo­natal/paediatric unit

 5 (12)

Other

4 (9)

Why was the ethics committee contacted?

Table 3 shows which eth­ical prob­lems were defined. The most common was limiting the treat­ment of seriously ill pa­tients, the will/wishes of the next-of-kin and patient autonomy.

Table 3  What eth­ical prob­lems were defined du­ring the consultation (n = 43)?

Number (%)

Limiting the treat­ment of seriously ill pa­tients

24 (56)

The will/wishes of next-of-kin

17 (40)

Patient autonomy

16 (37)

Coercion di­rec­ted at patient

9 (21)

Prioritising/re­sources

8 (19)

In­for­ma­tion/communication

8 (19)

Pledge of pro­fes­sional secrecy

6 (14)

Eth­ical prob­lems linked to reproduction

5 (12)

Other

6 (14)

Almost all of those who contacted the ­ethics committee stated that there were ­several reasons for the referral (table 1). Thirty peop­le (70 %) answered that they wanted a broad discussion of the case while 25 (58 %) wished to acquire an «external perspective». Sev­eral mentioned that the discussion had shed light on the complexity of the case and pro­vided a broader base for reaching a de­ci­sion. Twenty-two participants (51 %) had contacted the committee for advice on what de­ci­sion they should make – 17 of these were pro­spect­ive cases. Sixteen (37 %) wanted to gain sup­port for a de­ci­sion they had already taken and ten of these were pro­spect­ive cases. One per­son thought it was good to gain sup­port for a ­deci­sion that the next-of-kin had disagreed with, but commented that it was equally ­import­ant that the lat­ter’s views were also heard by a third instance with­out responsibility for the treat­ment. This hel­ped to ensure a more open process. In gen­eral there was lit­tle nega­tive feed­back, but one doctor whose de­ci­sion had not been sup­ported ­wrote: «It appeared to be a kind of trial in which I was to be called to account. To me it seemed that there was an excessively strong desire to comply with the patient’s wishes, and at the same time a lack of un­der­stan­ding that pa­tients do not alw­ays know what is best for them».

We also asked clinicians how useful the consultation had been (table 1). The consultation was found most useful when the clinicians needed advice pri­or to a de­ci­sion, when they wanted to have a broad discus­sion of the case, when it felt reassuring to get an «outside perspective», and in order to be better equipped to deal with simi­lar cases in the fu­tu­re. These were also among the most im­port­ant reasons for contacting the ethics committee.

The clinicians were least satisfied with the committee’s contribution to improved co­oper­ation and conflict processing.

Pro­ced­ures

Thirty peop­le (73 %) had given the committee written in­for­ma­tion about the case pri­or to the consultation, eight of the committees (20 %) had pre­lim­in­ary meet­ings with peop­le who could give in­for­ma­tion, eight participants (20 %) answered that all those involved were present du­ring the consultation, and two had given in­for­ma­tion about the case through a pri­or in­ter­view.

Ten peop­le (23 %) said that the consultation took place only a few days after they had referred the case to the committee, ­seven (16 %) had waited for a maximum of two weeks, 11 (26 %) had waited from ­between two to four weeks and 15 (35 %) had waited for more than four weeks. Ele­ven of those who had waited more than four ­weeks had a retro­spect­ive case. Ac­cord­ing to 37 of the clinicians (86 %), the wait­ing ­period was ac­cept­able.

Af­ter the consultation 33 participants (77 %) received the min­utes of the meet­ing. Eight (27 %) filed this in the case re­cord, eight (27 %) re­cor­ded the conclusion in the case re­cord, and 17 (57 %) filed the min­utes among their own docu­ments.

Participants in the consultation

Thirty-one re­spon­dents (76 %) stated that the entire committee/most committee members participated actively in the consultation and eight (20 %) said that some (2 – 4 members) participated. In one of the cases only one member participated. Twenty-seven ­clinicians (63 %) had been present du­ring the whole of the consultation. Six of the 15 who had not been present would have liked to have been present.

Table 4 gi­ves an overview of those who participated in the consultation in addition to the committee members. Ten re­spon­dents felt that others should also have been present, e.g. a lawyer, a social worker, a spe­cia­list, a doctor re­spon­sible for the patient and the next-of-kin. The average at­tend­ance ­during the consulta­tion was 9.4 per­sons (ranging from 4 – 20).

Table 4  Who, apart from members of the ­ethics committee, took part du­ring the ­consultation (n = 33)?

Number (%)

Nurse/nursing staff

22 (67)

Phys­icians with rele­vant ­profes­sional expertise

21 (64)

Departmental heads

11 (33)

Next-of-kin

 5 (15)

A re­pre­sen­ta­ti­ve of the patient

0

Patient

0

Other

 7 (21)

Participation of the patient/next-of-kin

No pa­tients were present du­ring the consultations (table 4), fam­ily members were present in five of the cases. In one case fam­ily members were invited but did not turn up.

Three of the five clinicians who were ­accompanied by fam­ily members said that this was unproblematic and po­si­ti­ve. One commented: «It was good to demonstrate that the whole patient was so clearly the ­focus». All five had felt that they could speak openly and that the me­di­cal side had been well clari­fied. How­ever, one per­son was of the opin­ion that a conflict of interests with the fam­ily had hampered the eth­ical ­deliberations and that the meet­ing had led to an increased level of conflict.

Outcome

Of the 42 who answered this question 21 (50 %) said that the ethics committee had ­given clear advice. For example, four had been ad­vised to withhold further treat­ment/ to terminate ongoing treat­ment. The advice given in two cases applied to the use of ­coercion, and two clinicians were rec­om­mended to seek a sec­ond opin­ion or to refer the case to the chief coun­ty me­di­cal officer.

Twelve clinicians (31 %) felt that new ­aspects had emerged du­ring the consulta­tion, including prin­ciples for dealing with simi­lar cases in the fu­tu­re.

Fifteen clinicians (38 %) stated that the consultation had resulted in prac­tical consequences – in six cases further treat­ment was dropped/ongoing treat­ment was terminated. Another per­son writes that the committee’s deliberations were of sig­nifi­cance in that greater attention was paid to eth­ical considerations afterwards.

Two answered the question on why the ­final de­ci­sion was not in line with the committee’s conclusions. They said that regard for the fam­ily, in­tern­al disagreement in the treat­ment team, pressure from lawyers/the me­dia and the emergence of new in­for­ma­tion played a role.

Discussion

It is im­port­ant to evaluate the work of the ­ethics committee for sev­eral reasons. It must be seen as a re­li­able sys­tem that can improve patient treat­ment, and it should be adapted to the needs of users to the grea­test pos­sible ­extent. The work must also be evaluated to justify the use of re­sources.

In this study we have approached healthcare professionals who have submitted individual cases to an ethics committee. The opi­ni­ons of the pa­tients and their next-of-kin are not represented. Stu­dies conducted in other countries have shown that healthcare professionals are often more satisfied with the committee’s deliberations on difficult cases than the patient and his/her fam­ily (13, 14). Sev­eral inter­national stu­dies show that healthcare professionals find the deliberations of the committee useful (13 – 15). It is to be hoped that the best interests of the ­patient are also safeguarded. How­ever, the consultation can also be of im­port­ance in ­cases in which the clinicians do not gain full sup­port for all their thoughts.

Who should participate in the consultation?

The Nor­we­gi­an committees carry out their work in dif­fer­ent ways. We have es­tab­lished that not all involved parties are routinely ­invited to take part in the consultation. No pa­tients participated, and the next-of-kin only took part in 15 % of the cases. We do not know if this is to spa­re them from hear­ing in­for­ma­tion that can cau­se anxiety or if there is a concern that their presence will hin­der discussions of difficult me­di­cal and eth­ical questions (8). Many ethics commit­tees undoubtedly perceive healthcare professionals as their primary tar­get group.

Communication prob­lems and conflicts often play a key role when a case po­ses an eth­ical chal­len­ge for the clinician (8, 13). In cases where there is disagreement, one party should not represent the view of the other party. This weighs in favour of involving the patient, the next-of-kin or someone who ­represents the patient, par­ticu­larly in pro­spect­ive cases. In retro­spect­ive cases in which the learn­ing principle assumes a greater role, it is not equally im­port­ant that the ­patient is directly or indirectly represented. Never­the­less, the committee must alw­ays ensure that the perspectives of the patient and next-of-kin are adequately elucidated and stressed. Their participation will help to ensure that everyone gains a greater un­der­stan­ding of the complexity of the case, and can also reassure them that they are being ­taken seriously (16). It is noteworthy that the study shows that clinicians generally found it unproblematic and po­si­ti­ve that fam­ily members participated in the consultation.

Among the clinicians who did not themselves take part in the consultation, ­several ex­pressed the wish that they had been invited. The participation of all parties can help to clarify uncertainty and dis­agreement concerning facts and to promote improved dialogue (16).

Low threshold of­fer

The 2004 survey showed that many committees only dealt with a few cases (5, 6). For the committees, becoming better known in hos­pi­tals is a continual chal­len­ge. Stu­dies have shown that there is a high threshold in me­di­cal circ­les when it co­mes to discussing prob­lems with third parties, and many clinicians are af­raid of criticism (5, 6). An ethics committee is intended to be a low threshold of­fer promoting the abil­ity to reflect on ­ethical mat­ters and is not meant to be a ­forum for moralizing and pas­sing judgment (8).

For many busy clinicians it is im­port­ant that accessibility to the ser­vi­ces of the ethics committees is ensured and that there is a short period of time be­tween the referral and the consultation. The survey showed that 35 % waited for more than four weeks, but this mainly applied to retro­spect­ive cases. Many committees can meet at short notice.

Pre­vi­ous­ly the ethics committees have been criticized for de­fi­cient pro­ced­ures and a lack of structure in the consultation (5). Few peop­le have commented on this in our survey. Altogether 77 % received the min­utes of the consultation, but in our opin­ion all those involved should receive these. This is resource demanding, but circulating the min­utes ensures openness and ac­cess.

Outcome and usefulness

A key question is what determines whether the case consultation in an ethics committee is experienced as useful. The survey showed that the committees had given clear advice in only half of the cases. The most common rea­son for clinicians contacting the committee was the desire for a broad discussion. The cases that are handled by the ethics committees are often com­plex, and it is not alw­ays pos­sible to iden­tify one correct so­lu­tion. In the fi­nal instance the phys­ician in charge of treat­ment must make a de­ci­sion. The deliberations of the ethics committee can be sup­port­ive in that the eth­ical aspects of a com­plex case are elucidated.

The survey showed that the consultations resulted in prac­tical consequences in 15 ­cases (38 %) – in six cases further treat­ment was withheld or the treat­ment was terminated. The fact that the work of the committee is influential in de­ci­sion pro­cesses in ser­ious cases stres­ses the need for qual­ity assurance.

Limitations

The survey has a number of limitations. The body of ma­te­ri­al is small, and there is a 50 % response rate. The survey was an­onym­ous be­cause we were par­ticu­larly interested in critical feed­back. This meant that we could not send rem­in­ders to the clinicians who had received the ques­tion­naire. The Cent­re for Me­di­cal Ethics has the na­tional responsibil­ity for strengthening the qual­ity of the work. The fact that the com­pleted forms were to be sent directly to the cent­re may have influ­enced re­spon­dents to answer in a po­si­ti­ve man­ner. Nor can we rule out the possibility that the ethics committees have sent the ques­tion­naire to the clinicians that they ­assumed were satisfied.

We do not know how many cases altogether the committees have discussed ­during this period. The individual committee is not required to submit an annual re­port to the Cent­re for Me­di­cal Ethics, even though most do. Nor do we know why so many committees did not pass on the ques­tion­naire. The 2009 annual re­port of the Cent­re for Me­di­cal Ethics showed that one in four committees had not discussed cases related to individual pa­tients in the previous year (17). Our survey will not be rele­vant for these committees. Another rea­son for the low participation may be that the survey was commenced just before the sum­mer vaca­tion. Therefore we cannot be certain that our re­spon­dents are re­pre­sen­ta­ti­ve of the clini­cians who have resorted to the ethics committees or that gen­eral conclusions can be drawn from the results. Our survey can only be regarded as a pi­lot study – a more sys­tem­atic and re­pre­sen­ta­ti­ve re­view should be conducted at a la­ter stage.

Conclusion

The survey indicates that healthcare profes­sionals who have made use of ethics committees in individual cases found this useful. At a time when more and more is pos­sible in the field of me­di­cine, new eth­ical chal­len­ges will emerge. The ethics committees can make a po­si­ti­ve contribution in such cases by ensuring that all involved parties are heard, and by shedding light on all aspects of the case – thus promoting ethically ac­cept­able solutions.

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