Abstract
To date, few Norwegian clinical ethics committees (CECs) have included patients or next of kin in case discussions. In 2008, Rikshospitalet's (The National Hospital‘s) CEC began to routinely invite patients and relatives into case discussions. In this paper, we describe seven cases discussed by this committee in 2008. Six involved life and death decision-making in collaboration with the next of kin, while one related case did not include relatives. In our opinion, representing the patient's perspective was advantageous to the discussion itself, to the conclusion made and to the next of kin's acceptance of the resolution. We believe that if the patient had been represented in the last case, the outcome might have been different. We conclude that successful patient involvement will rely on well-structured case discussions, an open atmosphere and good preparation and follow-up.
Introduction
The first three Norwegian clinical ethics committees (CECs) were established in 1996. 1 This initiative was driven by two groups: clinicians who wanted help with difficult ethical dilemmas; and politicians who desired a stronger emphasis on value issues in Norwegian health care. Today, every hospital trust is required by the Health and Care Department to have a CEC.2,3
Conflict permeates many of the individual patient cases brought to CECs.4,5 The Minister for Health has argued that increased emphasis on patient representation in CEC discussions of individual patient cases is important to ensure that patients’ and next of kin's rights are taken seriously. The way in which patients and relatives are involved in ethical dilemmas, in particular in end-of-life treatment decisions, has moral impact. 6
Norwegian CECs are multidisciplinary in membership and half of the committees have patient or public representatives as members. CECs have different mechanisms for ensuring that the patient's values and interests are heard in the discussion of a difficult case. This is most frequently achieved by having someone represent the patient, from the clinical team who knows the patient well and whom the patient accepts as a representative, or by interviewing the patient and/or their next of kin prior to the meeting. To date, only a few CECs have routinely included patients or relatives directly in the discussion.
From its inception in 1996, Rikshospitalet's (The National Hospital) CEC has taken great care to represent the patient's viewpoint during discussions of individual patient cases. 5 While initially patients were physically present in only a minority of case discussions, in 2008 their inclusion became routine. In this paper we (RF: ethicist and external member; TWRH: paediatrician and CEC chair) will describe the case discussions done by the CEC during 2008 and share our experiences with having patients or their relatives present during case discussions.
Methods
Rikshospitalet's CEC has 12 members: three doctors, three nurses, a chaplain, a social worker, a physiotherapist, a lawyer, a secretary and an ethicist who is also a physician (external member). CEC case discussions are based on a stepwise model, as shown in Box 1. 7
Framework for CEC discussions
What are the facts (medical, psychosocial, other facts)? Is there any uncertainty or disagreement related to the facts?
Define the ethical problem(s);
Who are the parties involved?
The values and legal regulations involved or threatened;
Based on the above - find acceptable solutions;
Evaluation/follow-up.
As the case is prepared, various people are identified who can contribute the necessary facts; they are then invited to the CEC meeting. A complicated medical problem may require experts from several specialties, within and outside the medical team, to be present. Nursing staff who know the patient well and who can contribute important facts and perspectives are also usually included.
8
When possible, cases are discussed anonymously. When discussing actual identifiable patient cases, it is CEC policy that patients:
Should be informed that the CEC will discuss their case; Need to consent to the sharing of information about themselves; and Must be given the opportunity to participate personally in the meeting.
If a patient is unable to participate, he or she should have the option of choosing someone to represent them in the meeting - a family member, a friend or a staff member. If so desired, patients must also be able to bring a support person(s) to the meeting. Everyone who is invited to a case meeting receives advance information in writing about how the CEC works. Case discussions usually last for 60-90 minutes.
Sometimes when the case raises questions of a more theoretical nature, or when principles are involved that may appear to be generalizable to a larger number of patients, individual facts seem to be less important. In such instances, the case may be discussed with fewer persons present, most frequently just the person who raised the case. The CEC's advice (if any) is not legally binding: the final decision is made by the doctor in charge.
Minutes written from each case discussion are initially drafted by the committee secretary and then edited by the committee chair. A preliminary report is then sent out to all those present during the discussion to comment, correct or add information as appropriate. The final report is filed in the patient's medical record as well as in the CEC archive.
The two authors of this paper have independently reviewed the minutes with special emphasis on whether the patient or next of kin's presence during the CEC deliberations may have influenced the quality of the discussions and the resolution of the cases. For confidentiality reasons, information that may identify the cases has been removed or changed.
Results
Seven individual patient cases were discussed prospectively in 2008. During six of these meetings, the patient's next of kin were present. In Cases 1-4 no conflicts were involved.
Case 1: Withdrawing life support in an infant (ad hoc meeting)
A premature, ventilator-dependent infant with multiple malformations, including severe brain pathology, was being treated in the neonatal intensive care unit. The clinicians questioned whether it was ethically justifiable to forego life-prolonging treatment.
During the CEC discussion the neonatologist and pae-diatric nurse in charge of the treatment and a geneticist were present. The baby's parents were also present. A very serious prognosis was confirmed. Neither the clinical team nor the parents had a definite opinion about the best course of action.
The CEC concluded that withdrawing life support was ethically justifiable due to the child's serious prognosis and because treatment would prolong the dying process and extend suffering, including that experienced by the parents and the rest of the child's family.
Case 2: Withdrawing life-prolonging treatment (ad hoc meeting)
This case involved a two-month-old child with a rare syndrome involving multiple, severe malformations who was being treated in the neonatal intensive care unit. The physician-in-charge reported that a palliative procedure had been performed, but very significant problems remained, making survival very uncertain. She could not rule out the possibility that after having received necessary intensive care treatment for one to two years, the child might possibly have a life outside hospital. However, the child would have severe handicaps and would very likely face repeated episodes when discussions of forgoing life-prolonging treatment (breathing assistance, heart failure treatment and surgery) would arise. Both parents, the consultant neonatologist and the baby's nurse were present during the discussion.
CEC members felt that continued active treatment could be justified, but asked whether such treatment was necessarily in the child's and in the family's best interests. Although justifiable, continued active treatment could not be said to constitute an ethical imperative in this situation.
Evaluation of the parents’ presence during discussions in Cases 1 and 2
Including the parents in the discussions enabled them to share important medical information as well as their feelings and thoughts with CEC members. Above all, they could share in the discussion of the ethical pros and cons and feel confident that vital considerations had been taken seriously by people who viewed the situation from a neutral position before the final decision was made. The dialogue between families and the committee appeared to reassure the families that the children's situation had been evaluated carefully by people who had the children's best interests in mind. Thus, the decision to withdraw life support could be defended against outside criticism and against any subsequent doubt as to whether the chosen solution really had been the best.
Cases 3 and 4: Withholding and withdrawing life-prolonging treatment (ad hoc meetings)
These cases both involved B, a 10-year-old previously healthy child with serious progressive disease. In both CEC meetings the physicians and nurses in charge were present, as were B's parents.
First meeting
The only treatment that could be offered was experimental. Although this could potentially prolong B's life, it carried a risk of serious complications and premature death. Neither the physician-in-charge nor the parents were able to decide whether this was the best alternative, or whether not doing anything was acceptable when the prognosis without treatment was so poor. The parents described B as someone who probably would not choose a prolonged life in poor health.
The CEC found it difficult to conclude, but argued that not accepting the treatment would allow B to spend time outside hospital while still in relatively good health and that non-treatment could be justified based on the principles of non-maleficence and beneficence; however a decision to proceed with treatment could also be defended ethically. A non-treatment decision was made after the CEC meeting.
Second meeting
This occurred 10 months later, following an unexpectedly rapid disease progression. B had been unconscious for several weeks and was fed through a percutaneous endoscopic gastrostomy tube. B's parents nursed B at home, and clearly expressed a deep love for their child. The clinicians felt that treating B actively (by artificial nutrition and hydration [ANH]) was now prolonging the dying process. For the parents, denying B food and hydration appeared emotionally unacceptable, although they understood that B would never regain consciousness.
The CEC discussion concluded that it was ethically justifiable to withhold ANH. Given B's permanent and irreversible state of unconsciousness, it appeared difficult to argue that B had an interest in prolonging life. However, the CEC also argued that there was no obvious ethical imperative to hasten such a decision, and that the timing of withdrawal of hydration must be acceptable for the rest of the family.
Evaluation of the parents’ presence during discussions
Throughout this process, the parents could share important medical information and CEC members could share the parents’ feelings and thoughts. By being present in the discussion, each party could share the ethical pros and cons and feel confident that these issues were being taken seriously. At the second meeting, B's parents received much sympathy for the way in which they had coped with their tragedy.
Both these meetings were emotionally taxing for CEC members, and it appeared that the parents appreciated the empathy expressed. The suggestion to withdraw ANH, when first put forward, appeared difficult for B's parents to contemplate. When the dialogue focused on a description of B's character, the parents recognized that the child would not have wanted a prolongation of life by artificial means. Thus, during the course of the dialogue the parents went from rejecting the idea of curtailing ANH to accepting it in principle.
Case 5: Ceasing life-prolonging treatment in a critically ill infant (ad hoc meeting)
A child was born with a syndrome that included recurrent seizures. These required a significant dose and range of medications, with significant side-effects. If the child survived, it would, due to a brain malformation, require round-the-clock care for the rest of its life. The parents and the nurses asked whether it was ethically justifiable to prolong the child's life any longer with this degree of suffering. They wanted to withdraw active treatment; however the physician-in-charge felt that it was too early to ‘give up’. Thus a tension had developed within the treatment team and between the physician and the parents.
The physician-in-charge, a nurse who knew the parents well and the parents participated in the CEC discussion. Each party explained and justified their convictions about the right course of action. The physician asked whether brain damage and dependency were reasons to declare a life as ‘not worth living.’ The committee supported both the parents’ and physician's feelings and points of view. Given that it is ultimately the physician's responsibility to stop treatment (to let the baby die), the CEC understood that it was important for him to feel sure that all possible courses of action had been explored regarding diagnosis and treatment, not least out of respect for the child. The group agreed that if the current treatment proved to be ineffective, it should be ceased and the baby provided with comfort care.
Evaluation of the parents’ presence during discussions
The discussion elucidated the different parties’ values and justifications for wanting to stop treatment. It became evident that all had the baby's best interests in mind. The parents were taken seriously; during the discussion they stated that knowing that the various diagnostic and therapeutic options had been taken seriously would be important for them after the baby had died.
After the CEC discussion, the medical team held two further extensive discussions a few days apart. In these meetings the medical options and ethical choices were thoroughly reviewed. All of these discussions eased the tensions within the treatment team.
Case 6: Stopping treatment in a patient who had undergone organ transplantation (ad hoc meeting)
This patient, M, had progressive organ failure following organ transplantation over a decade previously. M had initially experienced a few years of good health, but over time an increasing number of problems developed. M now wanted to stop all active treatment, including anti-rejection drugs, and wanted to be assured that adequate relief of pain and other unpleasant symptoms would be provided. The physician-in-charge of M's treatment felt that accepting the patient's choice and helping to avoid suffering related to cessation of treatment would be analogous to physician-assisted suicide. After all, M did not have an ‘end-stage disease’ and could potentially live for several more years. The patient's family also felt concerned that what M was proposing was tantamount to suicide.
M's treatment team was present during the CEC discussion. M was also invited to participate, but felt too sick to attend and sent a brother to act as M's advocate. A psychiatrist who had interviewed M and excluded serious depression or other psychiatric illnesses or threats to capacity also participated.
The discussion revealed that CEC saw M's wish as reasonable and acceptable. The right to autonomy was regarded as unequivocally encompassing the decisions M was making. Stopping treatment could be compared to stopping chemotherapy in a cancer relapse or ventilation in end-stage neurological diseases. The CEC argued that acceptance of M's right to exercise autonomy could not be classified as physician-assisted suicide.
Evaluation of the relative's presence during discussions
M's brother could communicate to M and their wider family that this wish to stop treatment was not regarded as ‘closet suicide’, that it was considered legally and ethically acceptable, and that M should receive all necessary comfort care. It seemed important to M's brother that the CEC had expressed admiration for M's toleration of years of suffering, and that they showed a respectful understanding of this difficult decision.
The CEC later learned that the discussion had been important both for M and for the family and their relationship during the last days of M's life. Having been reassured that they were not aiding or abetting suicide, the family could be with the patient without reservation as M's life drew to an end.
Case 7: Providing information to the child of a dying patient, contrary to the patient's wish
C had end-stage disease and had a teenage child, D. When the hospital routinely offered support to D, the parents declined this, claiming that according to their culture children should not be informed about such a serious diagnosis. The nurses caring for C were ethically and emotionally challenged by this, as they regarded it as part of their professional duty to offer the best possible support to families in situations like this. Should the parents’ reluctance to talk about death prevent D from receiving help they knew would be important? They asked the CEC to participate and assist in a discussion about the management of the case.
Several doctors and nurses participated. C and C's spouse were not invited to participate in the discussion because it was assumed that it would be very difficult for C's spouse to meet with a large group of unknown people. C's own health status prevented participation. It was also felt by the CEC that their presence would prevent a free discussion. The case was discussed anonymously, and C and C's spouse were not informed that the discussion took place.
The conclusion was that although the choice made by C and C's spouse appeared unwise, legally their parental authority had to be accepted.
Evaluation of the patient's/next of kin's absence from the discussion
If C or C's spouse had been present, they could have presented their reasons for not including D in C's final days. Further, the CEC could have communicated to C the importance of preparing children for the loss of a parent, and the likely subsequent costs of not doing so.
C died shortly afterwards. The CEC then learned that D greatly resented having been left out of the discussion and deeply regretted not having known that C was dying. If D had known, D would have spent more time at home and engaged in more open communications with C before C died.
Discussion
Our experience with including patients actively in the CEC discussions is generally positive. One may, of course, argue that this evaluation, undertaken through the eyes of two CEC members, is biased and too positive. It has been shown that patients and their relatives are less receptive to ethics consultation than health professionals.9,10 The reviews presented here are based on minute reports from the case discussions, and are not written with the specific purpose of elucidating the value of the presence of the patient in the case discussion. The authors have, in addition to reviewing the reports, based their evaluations on their impressions from the discussions. In order to have a scientifically sound evaluation, data should be based on patients’ evaluations as well as clinicians’ and CEC members’ evaluation.
In our view, some of the positive effects of these case discussions rest on the presence of the patient or relative in the discussion. Because patients (or a parent or relative) become privy to all the arguments and viewpoints that are raised in the discussion, the conclusions are easier to understand. Their presence guaranteed that they themselves had full opportunity to raise any issues that appeared important to them. All the meetings described were carried out in a very open and including atmosphere, and feedback from participants has been positive. Meeting the CEC face-to-face can show patients and relatives that CEC members take their situation seriously. In our view, none of these discussions functioned as mini-courts; on the contrary, great care was taken to elucidate the problems from different angles and to meet the different involved parties with understanding.
Participation in CEC meetings may also have an educational value for patients and relatives. Coherent thinking about clinical ethics requires a certain knowledge base, which obviously needs to be present in a CEC. A good discussion in a CEC case meeting ideally should demonstrate a systematic approach to identification of the problem as well as the relevant legal and ethical rules. 11 Casting light on the issue from more than one angle by applying different ethical principles or perspectives will show that although the issues are complex, there are ways of trying to organize them conceptually so that they may be understood. Ideally, therefore, the patient or relative should leave the CEC meeting with a feeling of having learned and understood, as well as having contributed and been heard.
The educational benefit of such meetings is not limited to the patient or relative, but may also extend to members of the medical staff: they may also benefit from discussions regarding the implications of both ethical and legal principles. Thus, in Case 6 we have reason to believe that perspectives on the implications, extent and limitations of patient autonomy may have been broadened by the discussion. The presence of a patient representative may have added to this.
A good CEC case discussion has the potential to defuse tension that may be building up or already be present within the treatment team as well as between the patient or relative and the team. By allowing patients/relatives and members of the team to verbalize their thoughts and feelings, mutual understanding and respect for the perspectives of all those involved may increase. Processes may be set in motion that will further contribute to an acceptable resolution of the problem - above all to reduce conflict in health care. Thereby a CEC discussion may also have a preventive function. 12 We believe this may have occurred in Cases 5 and 6, but in all six cases where relatives were present, subsequent doubt about the treatment decision may have been reduced.
One precondition for facilitating difficult decision-making processes and easing tension is that the case is discussed before conflicts have developed significantly, eroding trust. 2 Although it is clearly more challenging to have patients present during case discussion, it may be even more important where there is significant conflict. The presence of the patient will ensure that their values and interests are communicated directly, which could help the CEC in understanding more about the background for the conflict. It could also help resolve any miscommunications between the patient and health-care staff. Another reason to include patients in the discussion is to ensure that nothing is said during the discussion that is not accessible for patients or their relatives. That CEC members are moved by the sometimes painful histories and predicaments presented can suggest that the opinions expressed are the result of sincere involvement rather than abstract detachment. This, in our view, adds to the credibility of the advice given by the CEC. Credibility is also increased by the fact that opinions are not always unanimous, and by showing that occasionally more than one solution is deemed to be ethically acceptable.
Reiter-Theil introduced a distinction between two kinds of ethical problems. Cases 1-4 may be described as first-order problems, ‘true ethical problems’. Second-order problems are, according to Reiter-Theil, problems stemming from disagreement about the right thing to do or from miscommunication. 13 A lack of communication about the motives behind the preferred decisions (Case 5) or misconceptions of central concepts such as assisted suicide (Case 6) created ethical problems. When this vital knowledge was shared, disagreement was straightforwardly resolved in both these cases. Before 2008, some of the problems our CEC had discussed were a mixture of first- and second-order problems: disagreement about what is the morally right thing to do; however, due to lack of communication, misunderstandings and mistrust, disagreements had developed into deep conflicts. Having patients present during discussions may clarify which type the present problem is. A CEC discussion may ensure common understanding between the involved parties and may help to balance the different perspectives, including the patient's. 11
Conclusion
Having patients or relatives present in CEC case meetings is not without challenges. In particular, it may be extremely challenging for the patient to meet with a large group of strangers. In order to reduce stress, it is vital that patients or their relatives are well prepared in terms of what to expect and whom to meet, and that CEC's advice, if any, is not conclusive or legally binding. Follow-up with the patient or relative after the discussion is also very important to mitigate against negative feelings from the discussion. If preparation or follow-up of the patient is not possible, or if the conflict level is too high, models other than bringing the patient physically into the discussion need to be found. Language and cultural barriers are further reasons as to why patients may not always be included in the discussion. Although preferable, bringing the patient into the discussion in Case 7 was regarded as impossible. The patient was not informed that the case discussion took place. This is defendable since the team wanted advice, and the case was discussed anonymously. This case also illustrates the difference between a legally defensible and ethically optimized resolution of a difficult case.
The cases presented in this paper have been anonymized. All cases involve patients in two large hospitals in one hospital trust. All characteristics, e.g. gender, diagnosis and other characteristics which may identify the cases have been removed. The focus is on the ethical dilemmas and the consultation processes, not the patients and their medical conditions.
Footnotes
Acknowledgements
The authors wish to thank Professor Stella Reiter-Theil for having commented on this manuscript. Thanks too to members of the European Clinical Ethics Network (particularly the working group on the role of the patient) for valuable feedback on earlier versions of the manuscript.