This article considers an ethical dilemma confronted by a junior doctor on a specialist learning disabilities team, and discusses the challenges and pressures implicit in this, together with the absolute necessity not to compromise ethical values.

Dr Deborah Bowman (UK)

On my office wall, I have a magnet bearing the words ‘Be kind. No exceptions’. At first sight, such an exhortation appears to be little more than the sort of affirming aphorism that attracts some whilst simultaneously irritating others. Yet, embedded in those four words are the challenges and complexity of meaningful ethical practice. It is a short phrase that encapsulates the tension between ethics in theory and its practical embodiment in individual practitioners working daily with the widest range of people. Ethics is part of practice; it is a practical pursuit. And, it is the practice of ethics that is most difficult. Few readers are likely to question whether kindness is a virtue and an ethically desirable trait. Some may debate the relative moral weight that should be afforded to kindness when considered alongside other virtues. Others may question the moral primacy afforded to virtuous behaviour over consequences or principles. However, it is likely that most will accept that kindness is morally desirable and should inform care, be it professional or personal.

Yet, despite the ease with which most can accept the value of kindness (as an example), there is a vast literature that describes how care can be, and regrettably is, compromised. Such diminution in ethical standards is variously described as ‘ethical erosion’ (Feudtner, Christakis and Christakis 1994, Satterwhite, Satterwhite and Enarson 2000, Paice, Heard and Moss 2002, Jagsi and Lehmann 2004, Fryer-Edwards et. al. 2006, Cordingley et. al. 2007, Calton et. al. 2008, Bowman 2010), ‘compassion fatigue’ (Ramirez et. al. 1996, Keidel 2002, Thomas 2004, Showalter 2010), ‘empathy erosion’ (Hojat et. al. 2009), ‘moral distress’ (Hilliard et. al. 2007, Ulrich, Hamric and Grady 2010) and ‘burnout’ (Sprang et. al. 2007). Whilst most of the available research concentrates on healthcare students and professionals, partners, families and informal carers too may be affected by compassion fatigue (Perry, Dalton and Edwards 2010) and burnout (Angermeyer et. al. 2006).

Why are standards of care (and by implication kindness) compromised? It is, it is suggested, not because carers are ‘unethical’, ‘cruel’ or ‘indifferent’. Rather, it is because there is an enormous and significant gap between ethics in the abstract and its embodiment day after day in the provision of care. The challenge of ethics in practice is not to provide logical, rigorous and intellectual analysis of moral problems but to live and embody ethics, values and virtues. To ‘be ethical’ is easy in the abstract: ethical dilemmas in the lecture theatre and seminar room often appear to be deftly resolvable. However, the realities of ethical practice are more demanding. To return to the simple advice on my magnet ‘Be Kind, No Exceptions’: it requires the demonstration of kindness consistently and universally irrespective of emotion, exhaustion, frustration, personality clashes and irritation. Ethical practice, both including and beyond basic kindness, requires us to grapple with taboos: the person whom we dislike, the boredom of daily responsibilities, personal ambition, competitiveness and professional rivalries are just some examples of context that inevitably shapes practice but is not often discussed at all, let alone in relation to ethics. Consider the scenario below:

Dr Mayes is a junior doctor on a specialist learning disabilities team. The team is led by the recently-appointed consultant, Dr Chen who, in addition to her clinical work, has a successful research career and an honorary academic contract. Relations between Dr Chen and the team have not been easy since her appointment with members of the team increasingly aligning themselves according to professional discipline. Dr Chen is prone to angry outbursts with her colleagues and is sometimes unavailable to clinical staff members because she is working on her research. Dr Mayes routinely sees patients on behalf of Dr Chen and often feels out of his depth. In addition, to his clinical work, Dr Mayes is studying for his professional postgraduate examinations and he is anxious to enhance his curriculum vitae by participating in research. Dr Chen has suggested that the amount of study leave she is able to authorise for Dr Mayes and his possible participation in her research projects is dependent on their relationship telling him that he ‘has to prove himself and earn his rewards’.

Dr Chen emails Dr Mayes one evening asking him to see Mr Mark Boyes at a residential care home for adults with intellectual disabilities. Dr Chen suggests that Dr Mayes should conduct a ‘full assessment’ and ‘calm down the family’. Dr Mayes has never conducted an unsupervised assessment and knows that Mr Boyes deserves a comprehensive assessment from an experienced clinician. Dr Mayes also feels very uneasy about talking to Mr Boyes’ family whom he has never met, but has heard are ‘difficult’.

How should Dr Mayes respond?

Most readers won’t find it difficult to discern how Dr Mayes should respond. There may be differences of language but ultimately, the scenario requires Dr Mayes to put aside his own personal and professional interests, to act in Mr Boyes’ best interests by ensuring he receives the care he deserves and to explain to Dr Chen why he is unable to accede to her request. Dr Mayes may be tired, relatively junior in the professional hierarchy, keen to impress and to appear capable, but ethical practice demands that Dr Mayes puts Mark Boyes at the centre of his response. Altruism, service, conscientiousness, respect, integrity (and yes, kindness), require that Dr Mayes cannot do as Dr Chen has asked. Yet, this is the sort of situation that is characteristic of the process of ethical erosion and leads, often slowly but nonetheless surely, to a skewed interpretation of pragmatism supplanting principle.

What is the difference between those who are able to enact and remain true to their ethical values and those who remain silent and do not challenge others when they are ethically discomforted? It is unlikely to be a question of knowledge. Indeed, there is not much knowledge required of Dr Mayes in addressing the ethical dilemma in which he finds himself. It may be that he enjoyed his education in ethics and is skilled at analysing ethical problems. It may be that he tolerated or even disliked the ethics sessions that he has encountered in his training and has forgotten everything he ever learned. It does not matter: it does not take the conceptual frameworks of bioethics and familiarity with moral philosophy to recognise that Dr Mayes must not collude with Dr Chen. Indeed, as Singer, Siegler and Pellegrino (2001) argue, unless clinicians are able to draw on their learning in ethics to enhance daily practice and better serve their patients, it is difficult not to conclude that ethics education has ultimately failed.

Dr Mayes is likely to know what he should do, but what will determine whether he actually does what he knows he should? It is a question that has long occupied bioethicists but it is the field of business that provides one of the more useful explanations for why putting ethics into practice can be so difficult. Professor Mary Gentile has spent her career as an academic in business education and leadership. Having observed the dissonance between professional ethics in theory and what individuals actually do in the workplace led her to develop the ‘Giving Voice to Values’ project (Gentile 2010, 2010a). Drawing on research published after the Second World War that explored why some individuals acted as rescuers to save those threatened by the Nazis (London 1970, Huneke 1985), Gentile argues that the act of speaking out and being loyal to ethical precepts is a skill that requires practice like any other professional skill. Thus, those who have early experience of standing up for values and acting ethically in the face of pressure are more likely, Gentile argues, to find it possible to resist and even confront organisational pressure to behave unethically. It is therefore, Gentile suggests, possible to learn the skills that are required to avoid ethical erosion and remain true to one’s values and those of one’s profession. She has developed a skill-based model that draws on seven principles which are shown, with a brief explanation, below.

Giving Voice to Values: Seven Principles (Mary C. Gentile)

1.      Values: identifying and agreeing what is core and fundamental to one’s work.

2.      Choice: recognising that there are options and that everyone has experience of making difficult choices.

3.      Normality: acknowledging that conflict about values is to be expected and avoiding demonising those with whom one disagrees.

4.      Purpose: defining one’s role and being explicit about aims.

5.      Self-knowledge and Alignment: challenging one’s perception or characterisation of self with reference to personal strengths and previous successes.

6.      Voice: developing and practising ‘scripts’ that enable individuals to speak out and confront conflict about values or ethics.

7.      Reasons and Rationalisation: anticipating the reaction of those with whom we disagree and developing effective and relevant responses.

If Dr Mayes reminds himself of his values, draws on previous occasions (in both his personal and professional lives) where he has addressed a difficult situation, neither vilifies nor defers to Dr Chen, focuses on Mr Boyes and his care as his purpose, plans explicitly what he could say to Dr Chen and anticipates her response, he is more likely to find it possible, even essential, that he refuses Dr. Chen’s request. It is not a matter of knowledge, reasoning or intellectual debate: it is a practical exercise that depends on skills that are rarely taught formally and yet are an essential part of being ‘an ethical practitioner’.

Clinical ethics necessarily extends well beyond that which can be learned in lectures and tutorials. The practice of ethics is reinterpreted according to speciality, personalities and the culture of the working environment. Even the ‘core’ concepts that most students master early in their training become nuanced and contestable in practice where much of what has been learned has to be revisited. For example, for those working with people who have intellectual disabilities, the extent to which autonomy and therefore the legal definitions of capacity and consent are privileged in western medical ethics is experienced quite differently from colleagues working in surgery. Self-determination is not inherently morally valuable and it is a concept that encompasses moral assumptions about personhood, the nature of human relationships and the aims of healthcare. Respect for autonomy too often depends on a shared definition of personhood characterised by the ability to remember, to comprehend often complex information that might be poorly communicated by over-worked professionals and to express preference.  Those who advocate ‘autonomy’ and capacity alone too readily assume constancy of identity, experience and continuity of narrative that may be inapplicable to the person with intellectual impairment who is able to convey preference. In the context of people with intellectual disabilities, autonomy, or at least the version of it that dominates Western bioethics discourse, may not the most persuasive moral principle to inform practice depending as it does on assumptions that do not account for the experiences of many. The fluctuating, dynamic and subtle ways in which people with intellectual disabilities should be involved in care is goes well beyond basic ‘tests’ of capacity and written consent forms. Working with people with intellectual disabilities demands a narrative-oriented, evaluative and inclusive approach which mirrors the skills commonly used in ethical analysis, particularly what Ashcroft (2000) describes as ‘patient-centred ethics’. Imaginative communication, responsive care and creative support are integral to ethical practice and yet are rarely given the same attention as the ‘fundamentals’ of capacity and consent in ethics education (Bowman 2007).

Whilst there are concepts within bioethics that warrant reinterpretation when working with people who have intellectual disabilities, there are also rules to which no exception should be made. Honesty, respect, fairness and kindness are non-negotiable and easy to support in the abstract. It takes no effort for me to agree with the instruction to ‘be kind, no exceptions’ on my magnet, yet it is a struggle to remain true to that agreement when I am over-burdened, irritable, tired or fed-up. The reality of health and social care is that many, if not all, will be challenged to ‘make an exception’ and compromise personal and professional values at some stage. It is on those occasions, that we learn that meaningful ethics is an integral part of practice that depends on practising skills that are rarely addressed by formal teaching sessions in ethics. It is those occasions that make the difference.


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This article was first published on this site in 2010.