Patient involvement in clinical ethics services: from access to participation and membership

Abstract

Ethics consultation is a novel paradigm in European health-care institutions. In this paper, patient involvement in all clinical ethics activities is scrutinized. It is argued that patients should have access to case consultation services via clearly defined access paths. However, the right of both health-care professionals and patients indicates that patients should not always be notified of a consultation. Ethics education, another well-established function of an ethics committee, should equally be available for patients, lay people and hospital staff. Beyond access and utilization, lay membership on a clinical ethics service is a matter of transparency, equal participation, empowerment and democratization. Lay and patient perspectives will contribute to the quality of ethics services on all levels from case consultations to ethics education and policy development.

Introduction

Clinical ethics support is a relatively recent development in European health-care institutions, and the implementation of clinical ethics committees (CECs) is still developing in many European countries. Such services offer an additional tool to underpin both individual clinical decision-making and organizational ethics within institutions. It can be considered as a novel paradigm in health care: the moral dimension of decisions in patient care, particularly those which give rise to an ethical dilemma, is achieved by a multidisciplinary, communicative, reflexive process of ethics counselling. Apart from prospective case consultation on individual cases, the main functions of an ethics committee are education in matters of clinical ethics and the development of ethics policies or guidelines for the institution in which it is located.^1–4

In European deliberations on clinical ethics to date, little attention has been paid to the role of patients in clinical ethics services. What is the position of the patient and his or her representatives and family within this paradigm? This question was raised and debated earlier in North American clinical ethics, where it was described as a major second-generation challenge in ethics consultation.⁵ Nevertheless, most previous papers on patient involvement in clinical ethics services reduced the subject to the - no doubt relevant -problem of patient access to ethics consultation.^5–7 The scope of this paper, however, is to analyse comprehensively how patient involvement can be incorporated into the different (yet interdependent) components of clinical ethics services. Throughout, arguments are advanced to justify patient involvement in case consultation, education and policy development not only in terms of access but also as active members.

Access to and utilization of clinical ethics services

Case consultation

Should patients, their legal representatives and next of kin have access to clinical ethics consultation? Given that the first CECs developed from prognosis committees and that many aspects of clinical ethics discussion will involve prognostic information, ethics consultation could be argued to be a procedure for professional reflexion and consideration - a kind of peer review. Yet ethical conflicts are not restricted to questions of prognosis - they extend to patients’ preferences and autonomy, family wishes, therapeutic goals, medical indications and withholding or withdrawing treatment.⁸ On these issues, patients and their relatives might argue from a totally different perspective. They might even recognize a moral dilemma which health professionals do not.⁹

This suggests that patients should have access to ethics consultation. However, many CECs, particularly those that have been recently established, are reluctant to make themselves available to patients. This may be because committee members feel uneasy due to a lack of experience and expertise and may wish to first gain experience among professionals. They prefer to discuss these matters in a closed environment. Although this is more a pragmatic than a moral argument, it is quite common in German ethics committees. Comprehensive education and training in clinical ethics and case counselling is therefore required to overcome the reluctance. Personal experience from Hannover Medical University suggests that the number of requests for consultations will increase if patients have access to ethics consultation services. Further, the kind of cases and the nature of ethical dilemmas alter if patients and relatives have access; so the need for appropriate training is an important one.

Consultation requests by patients or proxies

If patients have access to CECs, the dimensions of such access need to be analysed in more detail; for example, should only patients themselves be entitled to request an ethics consult or should this right be expanded to surrogate decision-makers and/or family members? From a moral and legal point of view, it appears absurd to exclude legal representatives and relatives, especially if the patient is unconscious.

Assuming that it is legitimate for both patients and relatives to have access to clinical ethics support, we need to ask how these groups can come to know about this service - a fundamental requirement to access.⁵ There are a variety of mechanisms of access, including the Internet, brochures and posters, and in-house television or information direct from hospital staff. Clearly a hospital that decides to provide clinical ethics support to patients must also work proactively to make these services accessible. Pathways for patient access should also be defined: what constitutes a request for consultation and how and where can it be filed? Rather than a paper or electronic request, which will not involve any personal contact, a direct method of contact such as by a telephone or pager will be appropriate for responding to a person in moral distress and will also help establish mutual trust and confidence. This way the person requesting the consultation will know when, how and by whom their request will be dealt with.

The next step is the deliberation of the case in question. Who should take part in this consultation? Do patients and relatives have a right to a confidential counsel? Or do committee rules make it necessary to inform the doctors in charge? The quality of moral deliberation depends on a transparent and trustworthy process. On the one hand, health-care professionals may seek the reassurance that members of an ethics committee will not talk ‘behind their backs’.¹⁰ But on the other hand, patients (and their representatives) sometimes need to speak in confidence. In a hierarchical system like in hospital, the weak and vulnerable deserve encouragement and space to develop their ideas, concerns, attitudes and moral convictions. Sometimes the mere idea that physicians know about this meeting might change patients’ voices and argument. In some of our own cases, family members have needed clarification about patient preferences, while the patient was comatose. In cases like this, any disagreement or discord among family members would be less likely to be expressed explicitly in a meeting that included physicians and nurses. Confidentiality should be a basic expectation in ethics consultation: it is a matter of fairness and reciprocity that physicians and nurses should only be able to commission a confidential consult themselves if they accept that patients too can request confidential counsel.

If patients or surrogates are able to convene an ethics meeting, should they also be able to request physicians and nurses to join in? In most ethical problems, it is indispensable to learn more about medical aspects. Therefore, the ethics committee should support patients if they ask for a multidisciplinary meeting to deliberate the case. From our experience, doctors and nurses willingly contribute to such case discussions. However, a more challenging problem may occur during the case deliberation: will patients or relatives have the confidence to ‘hold their own’ in a discussion with health-care professionals? Patients or their proxies will certainly require empowerment and psychological support, a function that can be addressed in the training of ethics consultants, including mediation skills training.¹¹

Consultation requests from physicians and nurses

The moral and organizational challenges to patient involvement in clinical ethics support are completely different if the request for consultation is made by health-care professionals. Such requests, which form the vast majority of a committee's workload, may arise without the patient even being aware that an ethical conflict or dilemma exists. One part of those challenges has been called ‘framing problem’.¹² To which discussions should the patient be invited? A prima facie answer would be that patients should share every deliberation concerning his or her case; however, this may have serious consequences. It would require that the patient is informed about the consult and consents to ethics counselling. Applied strictly to all consultations, this would give patients the power to veto an ethics consultation.

It is therefore arguably unclear as to why patients should participate in every case consultation. For example, an exception to the general rule of patient participation would be where the ethical conflict arises solely among professional staff. This reflects the discussion about mutual assurances of confidentiality, which can provide staff with ‘an opportunity to discuss the issues among themselves, free of the inhibition that would accompany the presence of patients or relatives’.^{13, p2689} Additionally, if patients were involved in every case counsel, then this could cause substantial harm; if doctors are not yet assured about the patient's prognosis or treatment options, they need an open forum to freely discuss about care.¹⁴ It is not difficult to imagine that patients may become alienated or confused by being present in these discussions, which might result in needless fears, unjustified expectations or false hope.

When physicians have come to a consensus about the patient's care, the question arises as to how this information should be disclosed to them. Hermsen and ten Have¹⁵ have demonstrated that this is a separate process, guided by different moral ideas. This suggests that absolute transparency with patients may not always be appropriate, as a level of confidentiality to enable professional clarification is necessary in principle. It would therefore be nonsensical to ask routinely for patient consent prior to all consultations. Ethics committees can make a case-by-case decision as to whether or not to inform the patient and gain his or her knowledge and consent; problems of secrecy and confidentiality may result.¹⁶ Medical staff are not automatically authorized to disclose patient data to an ethics consult team. This problem could be resolved either by an anonymous deliberation or by a hospital policy that stipulates that ethics consultation is part of patient care.¹⁶

The majority of ethics cases, however, involve issues of patient preferences and welfare. Hospital staff and ethics consultants will often be unable to explicate these topics without direct contact with patients or their surrogates. For this reason, in most cases, it is advisable to invite patients and relatives to at least part of the consultation, as only the patient can help them to understand their subjective evaluation of therapeutic goals and weighing of risks and benefits. This reflects that ethical decision-making, like clinical decision-making, is dependent on subjective information. Ethics consultation should support patients to develop and deliberate these fundamental questions.

Patients’ and relatives’ support from the ethics consultant demands more than mere listening. It can, for example, be difficult to determine the wishes of a comatose patient. Even if an advance directive is available, it needs to be applied to the specific medical situation. Families need an active counterpart to resolve this often life-or-death problem. They also need active encouragement in the face of conflicting moral judgements as they ‘are disadvantaged vis à vis the power and knowledge of professionals’.^{17, p252} If patient preferences are in accordance with the predominant medical opinion, no quarrel will be raised.¹⁵ But if relatives intend to oppose a medically indicated procedure, ethics consultants should be able to moderate this conflict by initiating a process of deliberation between all stakeholders.

Documentation and feedback

It is generally advisable to keep records of ethics consultations.¹⁸ First, the protocols serve as a basis for internal transparency. Second, they provide external transparency, because clinical decisions derived from the consultation become morally comprehensible to everyone on both a medical and legal level. But should patients also have access to this documentation? Under German law, patients have the legal right to examine all objective medical data in their records. However, it is still unclear whether the protocol of an ethics consultation fits into this category. If patients ask for ethics consultation it is recommended that the protocol be given to them, because this is an honest gesture of transparency and trust. If patients or surrogates are part of the ethics deliberation, then arguably they should receive the protocol too.

Feedback should apply both ways. First, in addition to obtaining comment from health-care professionals, an ethics consultant should seek feedback on the consultation from patients and relatives. This is a prerequisite for sound quality assurance.¹⁹ Second, feedback should be provided to the patient and family - What are the consultant's impressions of the counselling process? Do patients and relatives require any other consulting services, such as pastoral care, psychological support or judicial advice? Feedback should be requested from and offered to all participants in an ethics consultation.

Ethics education

Clinical ethics services could also be utilized by patients on a completely different level: that of education. Ethics education could be offered not only to health-care professionals, but also to patients, relatives and healthy lay people. This could be organized either by the ethics committee, the hospital or by other institutions like a ‘Patient University’ (cf. www.patienten-universitaet.de).²⁰ The Patient University at Hannover Medical University addresses three groups of people in order to empower them in health-related issues: healthy citizens, (chronically) ill people and political representatives of patients (such as self-help groups, patient organizations or other health-related boards).

Possible topics for ethics education for patients and other lay people include information on patients’ rights; instructions for advanced directives; the legal and ethical framework of organ donation; health care at the end of life; informed consent in health care and medical research; responsible handling of genetic information; pregnancy and abortion; and justice and scarce resources in health care.

Different modes for such ethics education are useful. Written information (such as brochures) and interactive settings such as seminars are well-established. Short symposia on certain topics of clinical ethics for interested patients and citizens will also help to build and maintain mutual trust and understanding. Patients’ trust and confidence will benefit the health-care institution in terms of patient satisfaction and other quality measures. Patients will benefit because they learn not only about medical ethics but also about the specific opportunities of ethics consultation at their local hospital.

Representation and membership

Another emerging aspect of patient involvement in clinical ethics consultation is the question of patient representation on the ethics committee.²¹ Should ethics committees have lay members to represent patients? Who could act as patient representative? How could they be legitimized? What is their function and (presumed) perspective? Could they contribute to the duties of an ethics committee beyond case consultations?

Patient representatives on ethics committees

Arguments in favour of lay membership on a CEC are rooted in the claim that lay representatives will serve societal purposes such as participation, transparency and democratization of medicine. Beyleveld et al.²² state in a UK context that ‘in response to a crisis in medical authority, the setting up of CECs might be seen as a very visible way of responding to public concern about a lack of ethical input into clinical decision-making’ (p. 21). The authors formulate 11 goals for ethics consultation, of which one is:

‘Towards local democracy. If a CEC believes that participating is a good thing […], it might broaden its mission so that not only is the culture of clinical decision-making rendered less hierarchical but lay opinion from the local community is brought in to play a part. In this way, the mission of the CEC is to introduce local democracy into clinical practice in the community's hospitals’ (p. 20)²²

Who could serve as a lay member on an ethics committee? Often philosophers, jurists,²³ theologians and people from pastoral care are described as lay members. While such members are ‘external’ in that they are often recruited from beyond the hospital, they bring a professional, not a lay, perspective of medical ethics or medical law. This expertise prevails over their lay perspective. Social workers also have a different approach to ethical conflicts,²⁴ but they are usually members of the hospital staff and cannot be regarded as lay members.

Patient representatives in a narrower sense are community citizens, actual or former hospital patients, hospital ombudsmen or members of self-help groups. ‘Healthy’ citizens could best represent community perspectives because they are not biased by their own diseases. As members of an ethics committee, they could demand intelligible medical information, fair processes of informed consent and a balancing of power between doctors and patients. Citizen members could be acquired by direct invitation or through advertising. Some uncertainty will, however, remain as to whom citizen members actually represent -a problem also recognized in research ethics committees.²⁵ This may be overcome if a lay perspective is defined as ‘opposite’ to a medical professional's perspective. In that sense, citizen members simply represent a non-medical perspective.

If available, a hospital ombudsman could also serve as a committee member. They are familiar with the institution and its employees, and they are accustomed to acting as patient advocates. They are well known in the hospital and easily accessible. However, there may be doubt over whether they can be truly independent, as they officially represent the hospital and might experience conflicts of interest.

Another option for lay membership on an ethics committee is that of actual or former patients of the hospital, such as the fictional character of Mary Quigley in the narratives of case consultation by Minogue.²⁶ Many patients suffering from chronic diseases maintain contact with the hospital as outpatients. They are acquainted with the hospital, including its moral and communicative strengths and weaknesses. But a necessary condition for successful ethics support is personal continuity.²⁷ This challenge can therefore somewhat cynically be reduced to the following question: Is there an outpatient healthy enough to become a long-time committee member, but sick enough to represent patients effectively?

Another group to be considered as patient representatives are members of self-help groups. Such organizations focus both on medical and on psychosocial dimensions of being diseased and/or the perspective of proxies. Furthermore, general political aims are often championed by self-help groups, which makes their impact on ethics consultation unique and valuable. The irreducible pro-prium of patients - both from the outpatient clinic and from self-help groups - is their position of being affected (‘Betroffenheit‘), whose normative relevance has been shown.²⁸ Being affected by an illness can be seen as a kind of expertise that cannot be substituted by any other perspective. In contrast to the professional expertise of physicians and nurses, this kind of expertise has been described as ‘experienced or suffered competence’.²¹

A problem with lay membership on CECs concerns the question of education and competency in clinical ethics. What expertise (beyond being a patient) is desirable for committee membership and how could this be imparted? Apart from knowledge in matters of medical ethics and law, skills in moral discourse and decision-making should in particular be encouraged for all members of an ethics committee. It remains an issue for further research whether lay members themselves can become some sort of ‘professional’ simply by being involved in ethics consultation. A lay member of an ethics committee once expressed the peril that she had started as a ‘patient-understander’, but turned out to be seen as a ‘doctor-understander’ in her self-help group.²¹

Ethics case consultations

What role or perspective should patient representatives take in ethics consultation? Zimbelman²⁹ proposed that they play a mandatory role as patient advocate in every case consultation, in order to contribute directly to patient empowerment and help patients to comprehend and utilize the ethics consultation processes. Lay members acknowledge the asymmetry between physicians and patients, and they may be able to deal with this asymmetric relationship better than patients or relatives in moral distress. During the consult, lay members could become the mouthpiece for patient interests and reinforce the arguments of patients and proxies.

Lay members could, for example, specifically champion patient autonomy and self-determination. Therapeutic goals, treatment alternatives, risks and benefits have to be weighed according to patients’ preferences and values. Lay members - as medical outsiders - bear particular responsibility for the sensitivity of the negotiations to identify and ascertain patient wishes. They are also likely to be better able to appreciate that physicians and patients are substantially (and in fact existentially) interested in different medical data: patients are most concerned about the prognosis of the disease, while physicians may only be able to offer minimal data on prognosis. Even if statistics are available, the individual disease course is unpredictable. To physicians, the diagnosis tends to be an end in itself, while for a patient it is only a means to an end. In case of an ethical conflict, these differences of emphasis become important, because moral uncertainty and poor communication can lead to suspicion and mistrust. Lay membership of an ethics committee is the first step towards mutual understanding, shared decision-making and a consensus about further treatment.

If lay people become members of an ethics committee, issues of confidentiality will arise.¹⁶ Not being employed within the hospital, patient representatives in ethics consultation should be bound by an explicit commitment to professional secrecy, perhaps through holding an ‘honorary contract’. This will ensure that full disclosure and maintenance of trust is possible.

Contribution to ethics guidelines

Another task for clinical ethics services is the development of ethics guidelines and policy for the health-care institution. How can lay members support an ethics committee in this task? Generally, ethics guidelines are particularly useful if they address common and/or serious moral problems in the hospital. Some serious problems might be rare, while frequent dilemmas are of lesser importance. From the perspective of a patient representative, both frequency and seriousness might be estimated differently. Therefore, lay members might suggest ethics guidelines on different topics than health professionals would. From a physician's point of view, for instance, gaining informed consent is a frequent procedure with hardly any ethical conflict. Patients, on the other hand, might often feel that they are not well-informed, because information is either lacking or incomprehensible. This difference in emphasis will influence both form and content of ethics guidelines.

Interdependency of access and membership

It has been postulated above that there is a connection between patient access to ethics consultation and lay membership on the CEC. How can this interdependency be explicated and described? If an ethics committee seriously wants to support patient access to consultation services, it needs to do more than merely promote them. A hospital ethics committee will also need to gain the trust of a patient or relative, particularly if this individual is already in conflict with the hospital. A request for consultation usually occurs after all psychological and communicative options have failed, and both physicians and patients can experience significant moral and psychological distress.

Patients will arguably feel that their perspective will be respected if at least one member of the ethics consultation team is a lay member or a patient representative. The CEC at Hannover Medical University offers ethics consultation for physicians, nurses, patients and relatives. According to the statutes regulating CEC activity, the preferred setting for consultation is a round table consisting of the attending physicians, nurses, other health-care professionals, patient and family members and three members of the committee. Among these three members, it is recommended that there should be at least one physician, one member with a nursing background and one patient representative. Experience from many case discussions suggests that family members often seek eye contact with the lay member of the committee. They address this member when answering questions or asking for advice. This could be interpreted as an indicator for trust, confidence and empowerment.

Conclusion

The analysis provided in this paper can lead us to the following recommendations concerning patient involvement in clinical ethics consultation. Patients, their proxies and surrogates should have access to ethics consultation services. Confidentiality is a necessary prerequisite for sound ethics consultation. Hence, some requests for consultation will be dealt with confidentially. This implies that physicians should not routinely be informed about every patient's request and vice versa. Pathways of access should be clearly defined and not be overly bureaucratic. For reasons of trust and empowerment, patients and relatives should be able to deal with another lay person among the consultation team. Therefore, CECs need lay members. This group will introduce a specific and irreducible perspective, which will contribute to better participation, transparency and fairness in the hospital.

Footnotes

Dr Gerald Neitzke is a physician and philosopher by training and works as a medical ethicist at the Institute for History, Ethics and Philosophy of Medicine at Hannover Medical University, Germany. His research activities cover all areas of clinical and health-care ethics. He is the chair of the clinical ethics committee at Hannover University Hospital and a member of the Ethics Committee at DRK Kliniken Berlin. He is a member of the European Clinical Ethics Network and of the workgroup on ethics consultation in the German Akademie für Ethik in der Medizin (AEM).

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