Upon the completion of this chapter and with further self-directed learning you are expected to be able to:
Explain what is meant by the notion of ‘culture’.
Discuss the critical relationship between culture and ethics.
Examine critically the nature and implications of applying cross-cultural ethics in nursing and health care contexts.
Discuss the ways in which ignoring cultural considerations in nursing and health care contexts could adversely affect the significant moral interests of patients, families and communities from diverse cultural and language backgrounds.
Discuss the relevance of cultural competency, cultural safety and cultural humility when dealing with ethical issues involving patients and families of diverse cultural and language backgrounds.
Outline at least four questions that nurses should ask in order to assess their own cultural–moral competency to make moral decisions when caring for people of diverse cultural and language backgrounds.
Discuss how nurses might cultivate the quality and ethos of cultural humility in nursing practice domains.
The world in which we all live is characteristically multicultural in its nature and outlook. In 2004 the United Nations Development Programme (UNDP) estimated that more than 5000 different ethnic groups live in just 200 countries. The UNDP further estimated that in ‘two out of every three countries there is at least one substantial ethnic or religious minority group, representing 10 percent of the population or more’ ( Fukuda-Parr 2004 : 2). Today, due to the variety of criteria, characterisations and contexts that might be used to identify ethnic groups and nationalities, and the differing connotations that might be applied to these, accurately quantifying the ethnocultural characteristics of nations and the world is difficult ( United Nations Statistics Division 2018 ). Likewise, quantifying countries – Worldometer, for example, states there are 195 countries in the world. This number, however, does not include a number of ‘countries’ which may fall under the jurisdictions of another ‘recognised’ country, for example, Taiwan, the Cook Islands, Niue, Dependences, and other countries not recognised by the United Nations as ‘self-governing’ ( www.worldometers.info/geography/how-many-countries-are-there-in-the-world ). Despite these difficulties, it is generally agreed that there are probably ‘thousands’ of different ethnic groups in the world and that most nations are composed of people from diverse cultural and language backgrounds (see, for example, www.infoplease.com/ethnicity-and-race-countries ).
One of the greatest challenges facing nurses and allied health care professionals working in multicultural societies is caring effectively, appropriately and ethically for people from diverse cultural and language backgrounds ( Degrie et al 2017 ). One reason why caring for people from diverse cultural backgrounds is challenging is that professional caregivers do not always know, understand or share the same cultural meanings, set of assumptions about the world of experience, ultimate beliefs and moral values held by those for whom they care. This lack of knowledge and understanding of the different cultural world views and life-ways of different people can make it difficult for professional caregivers to provide care that is culturally appropriate, meaningful, therapeutically effective and ethically just. This difficulty is compounded if professional caregivers also do not have appropriate knowledge and understanding of the complex relationship that exists between culture, health and healing (therapeutic) behaviours.
It is well documented that cultural–language incongruence between patient and health care provider can also be problematic. Such incongruence can result not only in disagreements between professional caregivers, and between professional caregivers and patients and their families, but also in wrong judgments being made and ‘wrong care’, or what Kanitsaki, 2000 , Kanitsaki, 2003 calls ‘toxic service’, being provided. This, in turn, can result in the undesirable moral consequences of patients’ safety and quality care and even their lives being placed in jeopardy, as examples to be given in this and the following chapters will show (see also de Bruijne et al 2013 ; Divi et al 2007 ; Johnstone, Kanitsaki, 2006a , Johnstone, Kanitsaki, 2007a , Johnstone, Kanitsaki, 2007b ; Rodriguez et al 2013 ; Schwappach et al 2012 ; Shadmi 2013 ; Smedley et al 2003 ; Suurmond, Uiters, de Bruijne, Stronks, Essink-Bot, 2010 , Suurmond, Uiters, de Bruijne, Stronks, Essink-Bot, 2011 ; van Rosse et al 2016 ; Vermeulen 2015 ; Wilson-Stronks et al 2008 ). Of relevance to this present discussion is that cultural–language incongruence between patient, family and health care provider can also result in distressing moral disagreements about care and treatment options, particularly in contexts involving the provision of end-of-life care ( Bullock 2011 ; Candib 2002 ; Chater & Tsai 2008 ; Gysels et al 2012 ; Johnstone 2012b ; Johnstone & Kanitsaki 2009a ; Sarafis et al 2014 ; Van Keer et al 2015 ).
In order to respond effectively to the challenges posed by caring for people from diverse cultural and language backgrounds, nurses and their co-workers need to have a robust understanding of the nature of culture and its relationship to ethics . What particularly needs to be understood is that culture exists logically prior to ethics , and not the other way around as has been classically contended in moral philosophy and other related disciplines ( Cook 1999 ; Edel & Edel 2000 ; Moser & Carson 2001 ; Sikka 2011 ). In other words, ethics and the various systems of ethics that exist are every bit the products of the cultures and the times from which they have emerged and which have shaped, developed, refined and sustained them. They are ‘ always culture specific’ and are never ‘culture free’ in the sense that their:
validity, applicability and moral forces of persuasiveness is [sic] dependent upon the assumption of a plethora of cultural categories … [which] operate tacitly as background assumptions in the architecture of reasoning. ( Abimbola 2013 : 31)
In short, ethics and its derivatives have been, and continue to be, ‘culturally constructed’ ( Cortese 1990 : 1) – that is, they are human inventions (not naturally occurring material facts that are interwoven into the fabric of the observable world), which are ultimately learned and developed by living with others. One observer argues even further, contending that so substantive is the relationship between culture and ethics that multiculturalism is itself ‘a universal moral theory in its own right’ ( Durante 2018 ).
Arguably one of the most cogent explanations concerning the relationship that exists between culture and ethics has been advanced by Yetzer and colleagues (2018) , who persuasively argue that ‘Cultural worldviews provide the standards that moral behavior should reflect, and against which moral judgments are made’ (p 244). Drawing on the tenets of terror management theory (TMT), 1 which they situate as being complementary to other contemporary theories of human ethics, they explain that the moral standards imbedded in people’s cultural world views serve as powerful buffers against the anxieties that can be evoked when reminded of the inevitability of their own mortality – that is, that ‘we are all fated to die’. Moral judgments and moral behaviour, they argue, are ‘central components of this anxiety buffering system’ as they play an important role in determining people’s evaluations of themselves and others. Because of this, people are highly motivated to uphold morality in both themselves and others ( Yetzer et al 2018 : 246). They explain:
Those who violate the moral dictates of our culture challenge their validity. A person who fails to abide by moral principles is implicitly suggesting that these principles do not always apply; because these principles are essential for our [symbolic] victory over death, moral transgressors must be punished accordingly. And because our own immortality, both literal and symbolic, depends on being a valued participant in the meaningful reality provided by our culture, we are compelled to live up to the moral prescriptions that we have accepted as the fabric of our reality. ( Yetzer et al 2018 : 246)
They conclude that a better understanding of the relationship that exists between TMT and ethics – and the role that human ethics / morality plays in managing people’s death-related anxieties (see also Johnstone 2012b ) – could yield important insights into the problems that societies locally and globally are facing.
Cross-cultural ethics and nursing
Leininger (1990b : 49), a noted American leader in transcultural nursing, has made the important claim that ‘culture has been the critical and conspicuously missing dimension in the study and practice of ethical and moral [sic] dimensions of human care’. She has also criticised nurse ethicists for their failure to recognise the important and significant role that culture plays in guiding moral judgments and behaviour in human care contexts. She contends further that some nurse ethicists have even ‘deliberately avoided’ the concept of culture altogether, preferring instead to assume the universality of the ethical principles, codes and standards of human conduct that have become so prevalent in mainstream nursing ethics discourse (p 51). Leininger concludes that, if nurses are to provide appropriate ethical care to individuals, families and groups of different cultural backgrounds, they must have knowledge of and the ability to uphold sensitively and in an informed way the culturally based moral values and beliefs of the people for whom they care (p 52). On this point, she states:
most assuredly, the evolving discipline of nursing needs an epistemic ethical and moral [sic] knowledge base that takes into account cultural differences and similarities in order to provide knowledgeable and accurate judgments that are congruent with clients’ values and life-ways. (Leininger 1990b : 52–3)
Without this knowledge base, Leininger contends, it is not possible for nurses to make the ‘right’ decisions or to provide the ‘right’ (ethical) human care when planning and implementing nursing care (p 64).
Questions remain, however: ‘What is culture?’ and, further ‘What is culture’s relationship to and role in ethics generally, and nursing ethics in particular?’ It is to briefly answering these questions that this discussion now turns.
Culture and its relationship to ethics
Culture is an extremely complex concept, and one that has over time been defined, interpreted and analysed from a variety of disciplinary perspectives (see, for example, Beals 1979 ; Boyd & Richerson 2005 ; Bullivant, 1981, Bullivant, 1984 ; Chase 2006 ; Fieldhouse 1986 ; Handwerker 2009 ; Helman 1990 ; Kluckhohn 1962 ; Kroeber et al 1952 ; Leininger 1991 ; Mead 1955 ; Midgley 1991a ; Prinz 2012 ; Sorokin 1957 ; Tyler 1871 ; Wuthnow et al 1984 ). Not surprisingly, this has seen the emergence of a number of rival theories and viewpoints on what culture is, and on what its relationship to and role in human affairs is or should be. Even anthropologists do not agree about how culture should be defined, interpreted and analysed. Nevertheless, there is some agreement among scholars that culture is a human invention and one which is critical for human survival and the development of human potential.
What then is culture? As already stated, culture has been defined, interpreted and analysed in a variety of ways. For example, Tyler (1871) , who is credited with providing the discipline of anthropology with its first modern definition of culture, defined it (p 1) as:
that complex whole which includes knowledge, belief, art, morals, law, custom, and any other capabilities and habits acquired by man [sic] as a member of society.
Eight decades later, after undertaking a comprehensive review of the way in which Tyler’s definition had been used, Kroeber and colleagues (1952) famously published a refined narrower definition, notably that culture ‘consists of patterns, explicit and implicit, of and for behaviour […] including their embodiment in artifacts’ (p 181). From that time scholars and researchers continued to review and revise their ideas of ‘What is this “thing” called culture?’ Drawing on these foundational definitions, contemporary answers have included a range of definitions such as the following.
culture is made up of the energy systems, the objective and specific artefacts, the organisations of social relations, the modes of thought, the ideologies, and the total range of customary behaviour that are transmitted from one generation to another by a social group and that enables it to maintain life in a particular habitat.
Bullivant argues along similar lines, adding to the description of culture that it is something which (1981: 19):
can be thought of as the knowledge and conceptions embodied in symbolic and non-symbolic communication modes about the technology and skills, customary behaviours, values, beliefs, and attitudes a society has evolved from its historical past, and progressively modifies and augments to give meaning to and cope with the present and anticipated future problems of its existence.
Another description of culture, however, and one which is very helpful to this discussion, comes from an Australian nursing scholar and first Professor of Transcultural Nursing (circa 2000–2005, retired 2005), Olga Kanitsaki AM (Member in the Order of Australia). Kanitsaki describes culture as follows (1994 : 95):
Culture includes a particular people’s beliefs, value orientations and value systems, which give meaning, logic, worth and significance to their existence and experience in relation to both the universe and other human beings. These value orientations, value systems and beliefs in turn shape customs and traditions, prescribe and proscribe behaviour, determine the structure of social institutions and power relations, and identify and prescribe social relations, modes and rules of communication, moral order , and, indeed, the whole spirit and web of meaning and purpose of a given group in a particular place and time. Culture thus reflects the shared history, traditions, achievements, struggles for survival and lived experiences of a particular people. Its influence extends over politics, economics, the development and use of technology, the boundaries and meaning of class, the determination of gender roles, and so on. [emphasis added]
Culture can be seen as an inherited ‘lens’ through which individuals perceive and understand the world that they inhabit, and learn how to live within. Growing up within any society is a form of enculturation, formal and informal, whereby the individual slowly acquires the cultural ‘lens’ of that society. Without a common consciousness and shared perceptions of the world, both the cohesion and the continuity of any human group would be impossible.
Unfortunately, it is beyond the scope of this text to discuss the concept of culture at the level and depth it warrants, and its consideration must be left for another time. Nevertheless, there is room to emphasise the point that, regardless of the competing theories on what culture is, there is general agreement that culture encompasses a:
(more-or-less) coherent set of patterned and coordinated activities rationalized by a shared set of norms, which are rationalized by a shared set of assumptions about the world of experience. ( Handwerker 2009 : 16)
As such, it also plays a fundamental and critical role in mediating people’s values, beliefs, perceptions and knowledge about the world within which they live, influences people’s behaviour and generally gives logic and meaning to a whole way of life in that world, and ultimately provides the ‘blueprint’ for their (human) survival in that world ( Kanitsaki 2000 ). Given these considerations, it is clear that culture’s relationship to and role in ethics (including its relationship to the theoretical underpinnings and practical application of ethics) cannot be plausibly denied.
Nearly all of us know that there are in the world many people whose moral values and beliefs are radically different from our own ( Midgley 1991a : 72). And we also know that in any one society there is likely to be a diversity of valid moral viewpoints and approaches ( moral pluralism ), and that this has created the possibility for, and the actuality of, irreconcilable moral disagreements, examples of which are given throughout this text ( Elliott 1992 ; Johnstone 2012b ). Questions arising here include: ‘What, if any, is the best way to respond to moral pluralism?’ and, more specifically: ‘How should nurses respond to the challenge of what can be appropriately referred to as cross-cultural ethics?’ It is to briefly answering these questions that this discussion now turns.
The nature and implications of a cross-cultural approach to ethics
It is not the purpose of this text to advance a substantive theory of cross-cultural ethics or cultural relativism, or to provide an in-depth study of the ethical concepts, theories and practices of the world’s different cultural groups. Such a task is beyond the scope of this present work and requires much more space than it is possible to provide here. (See, meanwhile, Cortese 1990 ; Coward & Ratanakul 1999 ; Edel & Edel 2000 ; Elliott 1992 ; Fry & Johnstone 2008 ; Leininger 1990b ; Macklin 1998 ; Marshall 1992 ; Midgley 1991a ; Moser & Carson 2001 ; Singer 1991 .) Nevertheless, it is important to have some understanding of the nature and implications of cross-cultural ethics (a form of ethical pluralism), and of how nurses might respond better to the challenges it poses.
One crucial point requiring understanding is that, while all societies have some sort of moral system for guiding and evaluating the conduct of their members, the moral constructs of one culture (e.g. North American or English culture) cannot always be applied appropriately or reliably to another culture – at least not without some modification ( Silberbauer 1991 : 15). Further, language usage alone, and the difficulties encountered in reaching accurate culturally thick (rich) translations of accepted moral terms and concepts, may even make meaningful moral discourse across cultures impossible ( Stout 1988 ). These points have, however, been largely overlooked by mainstream (Anglo-American) moral philosophers, who have tended to support an imperialist model of morality (termed ‘ moral imperialism ’) – that is, that their way of moral knowing and thinking is not only superior but ‘right’, and is thus something to be applied (read imposed) universally on to others whose moral systems they have judged to be inferior ( Jenkins 2011 ; Midgley 1991a ).
This is an inadequate and misleading approach to ethical practice, however, and one which warrants being questioned. Nevertheless, this does not mean that mainstream Anglo-American moral philosophy itself should be abandoned. To the contrary – its rich traditions offer us important insights into our own culture-specific moral values and beliefs about how to be moral beings. We must, however, pay much greater attention to the influences of the primary organising principle of morality, namely culture . We also need to recognise that, although it is true that all cultures have some ‘priority rules’, or principles for arbitrating between conflicting obligations and duties, just what these rules and principles are, how they are defined and interpreted, which are emphasised and given priority, when and how they will be applied, and who ultimately applies them (and to what end) will, contrary to an imperialist model of ethics, vary across – and even within – different cultures ( Midgley 1991b : 11; Tai & Lin 2001 ; Yetzer et al 2018 ). As Abimbola (quoted earlier) correctly points out: ‘ethics are always culture specific’ and as such will be expressed differently cross-culturally and intra-culturally ( Abimbola 2013 : 31).
An interesting example of the different ways in which morality can be expressed cross-culturally or even intra-culturally can be found in the case of small-scale and large-scale societies. In small-scale or traditional societies, for example, morality tends to be viewed as a process – as a means to an end – and is expressed through the quality of relationships (characterised by upholding values such as friendship, loyalty to kin, empathy, altruism, familial trust and so on) rather than a deontological adherence to abstract principles. Silberbauer explains (1991 : 27):
Morality is less of an end in itself but is seen more clearly as a set of orientations for establishing and maintaining the health of relationships. Morality, then, is a means to a desired, enjoyed end.
This view is in sharp contrast to that upheld by large-scale (non-traditional or industrialised) societies, in which relationships are less proximate, less intense and less significant, at both the individual and the societal level. Here morality is viewed as an end in itself rather than as a means to an end, and is expressed by adherence to rules ( viz adjudicating the conduct between strangers) rather than by and in the quality of relationships per se. On this point, Silberbauer explains (1991 : 27):
Morality certainly provides a set of orientations and thus helps to create and maintain coherent expectations of behaviour, but operates impersonally in that there is not the same capacity for negotiation. Morality thus tends to be valued more as an end in itself and less as a means to an end. [emphasis added]
To illustrate the different ways in which small-scale and large-scale societies might each express their different moralities, Silberbauer (1991) uses the simple example of the relationship between a bus conductor and a passenger. He suggests that, in large-scale societies, where relationships tend to be ‘single-purpose and impersonal’, the relationship between a bus conductor and a passenger would be of limited importance, and would probably manifest itself quite differently than it would in a small-scale society, where relationships were more proximate, multi-purpose and personal. He points out (p 14):
how different it would be if the conductor were also my sister-in-law, near neighbour and the daughter of my father’s golfing partner – I would never dare to tender anything other than the correct fare. In a small-scale society every fellow member whom I encounter in my day is likely to be connected to me by a comparable, or even more complex web of strands, each of which must be maintained in its appropriate alignment and tension lest all the others become tangled. My father’s missed putts or my inconsiderate use of a motor-mower at daybreak will necessitate very diplomatic behaviour on the bus, or a long walk to work and a dismal dinner on my return.
A more relevant example here can be found in the comparison of nurses working in large city-based university teaching hospitals with those who work in small, close-knit rural ‘outback’ country communities. It has been my experience that nurses working in the small rural or remote (‘outback’) country communities (where ‘everyone is known to everyone’) are far more vulnerable to putting local community members ‘off-side’ by offending an individual member of that community than are nurses working in the large city-based university teaching hospitals. In this instance, we could speculate that nurses working in small country-based community nursing care settings might put more weight on preserving the quality of relationships in that community than on upholding abstract moral principles . Conversely, nurses working in the large and impersonal communities may put greater emphasis on upholding abstract principles of conduct than on preserving the quality of relationships with ‘strangers’ whom they are unlikely to encounter more than once during their working lives.
This is only an example, however, being used here to help clarify Silberbauer’s point. In reality it is likely that nurses express morality both as a process (as a means to an end) and as an end in itself . Whether this is so, and the extent to which it is so (i.e. where the balance lies), may depend ultimately on the nature of the context they are in – whether it is characterised by personal or impersonal relationships. When it is considered that it is not contradictory to view the maintenance of quality relationships as an important moral end in itself (not just a means to an end), there is room to suggest that the distinction Silberbauer makes may, in the final analysis, be overstated.
Despite this observation, Silberbauer is correct to point out that abstract moral principles do not always have currency in some cultural or social groups, and that, even if there do exist some commonly accepted standards of moral conduct, we cannot assume that these standards will be expressed or applied uniformly across, or even within, different cultural groups. A good example of this can be found in the wide and popular acceptance of the moral principles of autonomy, non-maleficence, beneficence and justice, which were considered in Chapter 3 . These principles are referred to and used widely in mainstream bioethics discourse (see in particular Beauchamp & Childress 2013 ), and are viewed popularly as ‘self-standing conceptual systems by which we can impose some sort of order upon ethical problems’ ( Elliott 1992 : 29; see also Abimbola 2013 ). But, as Elliott correctly points out, what proponents of this view tend to overlook is that, in reality, ethics does not stand apart. It is one thread in the fabric of a society, and it is intertwined with others. Ethical concepts are tied to a society’s customs, manners, traditions, institutions – all of the concepts that structure and inform the ways in which a member of that society deals with the world ( Elliott 1992 : 29). He goes on to warn that, if people forget this inextricable link between ethics and culture (p 29):
we are in danger of leaving the world of genuine moral experience for the world of moral fiction – a simplified, hypothetical creation suited less for practical difficulties than for intellectual convenience.
A helpful example of the inaccuracy of viewing ethical principles as self-standing conceptual systems rather than as ethical concepts tied to a particular tradition (culture) can be seen in the way in which the principle of autonomy tends to be interpreted and applied in professional health care contexts. As stated in Chapter 3 , the concept of autonomy refers to an individual’s independent and self-contained ability to decide. As a principle, autonomy prescribes that a cognitively competent individual’s preferences ought to be respected even if we do not agree with them – and even if others consider them foolish – provided they do not interfere with or harm prejudicially the significant moral interests of others.
At first glance, this articulation of the concept and principle of autonomy appears unproblematic. And it is probably true that most nurses familiarising themselves with the moral nature and application of the principle of autonomy value the ‘right’ to make their own self-determining choices, and would probably feel a strong sense of outrage if their considered wishes were overridden arbitrarily by another. They may also share a strong conviction that patients should always be informed about their diagnoses, and about the details of their proposed treatment and care, and that it would be a gross violation of patient rights not to accept or facilitate patients’ self-determining choices regarding their own care and treatment options. In most cases, this position would probably be a demonstrably justifiable one to take. It would, however, be a grave mistake to accept the concept and principle of autonomy (as articulated above) as holding universally – that is, without exception. Consider the following.
Earlier in this book, it was pointed out that definitions of ethical terms and concepts can be ‘ethically loaded’, and hence can themselves be an important influence on how a moral debate or analysis might be conducted and what the outcomes of a given debate or analysis might be. This is true even (or perhaps especially) in the case of moral principles – the moral principle of autonomy being a case in point. It will be noted, for example, that even the definition of the concept and principle of autonomy reflects the dominant cultural values of the highly individualised large-scale Western Anglo-American culture from which it has arisen ( Abimbola 2013 ; Blackhall et al 1995 ; Candib 2002 ; Hanssen 2004 ; Jennings 2016 ; Johnstone & Kanitsaki 2009a ; Kuczewski 1996 ; Marshall 1992 ; Neves 2004 ; Tai & Lin 2001 ). Of particular importance to this discussion are the following terms: person , individual , independent , self , self-contained . Here the ethical loading clearly rests on particular culturally constructed and culturally dependent (Western) ideas of ‘personhood’ and ‘selfhood’ and of respecting individualism, independence and isolation (insulation) from one’s social ‘connectedness’. (As a point of interest, in contemporary Italian culture the notion autonomy [ autonomia ] is often used synonymously for isolation ( isolamento ) ( Surbone 1992: 1662 ).) For people who hold these values, this ethical loading is not a major problem. But for people who do not hold or share these values – who may, for instance, subscribe to the values of collectiveness, interdependence, and social connectedness (context) and whose idea of informed consent is informed by ‘ontological beliefs about illness, words and the nature of causation’ ( Abimbola 2013 : 36) – it is open to serious question whether the concept and principle of autonomy as popularly defined and applied in mainstream bioethics discourse could, or indeed should, be given any currency in mediating the relationships, and the responsibilities within those relationships, of people who do not subscribe to the values embraced by autonomy as described.
To illustrate the kinds of moral problems that can arise as a result of applying the principle of autonomy in an abstract, universal and context-independent way rather than in a substantive, context-dependent, culture-specific way, consider the case of Mr G (adapted from Johnstone & Kanitsaki 1991 ). Mr G, an elderly Greek man who spoke no English, was admitted to hospital for investigations, and was later diagnosed as having cancer of the lung. Mr G had a number of other health problems, including a mildly debilitating hemiplegia – although he could move about with assistance. Before his admission into hospital, Mr G was totally dependent on and cared for by his family.
When radiological and laboratory tests confirmed the provisional medical diagnosis of a malignant lung tumour, Mr G’s physician arranged for an interpreter to come to the ward and through him informed Mr G directly that he had cancer of the lung. In this instance, it was the physician’s personal policy to be candid with his patients, and inform them according to what he judged to be ‘their right to know and be informed’, as prescribed by the moral principle of autonomy. Unfortunately, in this case, although well intended, the physician’s approach was culturally inappropriate, and had the undesirable moral consequence of causing the patient and his family otherwise avoidable suffering ( Johnstone & Kanitsaki 1991 ).
A mainstream ethical analysis of the physician’s actions in this case would probably support the view that informing the patient of his cancer diagnosis was a ‘morally right’ thing to do. And, interestingly, when I present this case to students (nursing and medical students alike), most contend that the physician’s actions were not only morally correct but praiseworthy , given the reluctance by doctors in the past to be candid with their patients about diagnostic, care and treatment matters of this nature (see, for example, Candib 2002 ).
From a cultural perspective, however, the physician’s actions can be shown to be not only mistaken but also morally harmful. In this case it would have been more culturally appropriate and morally beneficial had the physician communicated the cancer diagnosis to the patient’s family rather than to the patient himself. This is because, as Johnstone and Kanitsaki point out (1991 : 280), during a health crisis, patients like Mr G who are of a traditional (rural, small-scale societal) cultural background, who may have only partially acculturated to the mainstream culture of their host country and who have retained the core cultural values acquired in their country of origin tend to prefer:
the close involvement of their family and value the supportive, protective and therapeutic role that the family can and does play when one of its members is ill or suffering … Indeed, the involvement of the patient’s family is an essential and integral part of the therapeutic relationship and of the process required to uphold the patient’s best interests.
By not recognising the protective authority of Mr G’s family to decide ‘ if , when , how and by whom the diagnoses should be disclosed to Mr G’, the physician inadvertently ‘pointed the bone’ at his patient and thereby undermined rather than promoted Mr G’s autonomy. The reasons for this are complicated, yet important. Kanitsaki (1989a) explains that for many rurally based Greeks who emigrated to Australia during the 1950s and 1960s the very word ‘cancer’ carries a whole range of negative connotations and thus is something never to be mentioned, since to do so would be to risk stimulating the nocebo phenomenon. The nocebo phenomenon or nocebo effect (from the Latin noceo , ‘I hurt’, and the Greek nosis , ‘disease’) is a phenomenon that is opposite to the placebo effect ( Pilcher 2009 ). First described by Helman (1990) in his book Culture, health and illness , research over the past decade has increasingly shown that the nocebo phenomenon – sometimes described as ‘placebo’s evil twin’ ( Reid 2002 ) – comes into effect when negative health beliefs and expectations lead to a worsening of symptoms or general health ( Barsky et al 2002 ; Benedetti et al 2007 ; Horsfall 2016 ; Liccardi et al 2004 ; Olshansky 2007 ; Planès et al 2016 ; Wells & Kaptchuk 2012 ).
The growing research-based evidence on the nocebo effect helps to explain why, in some cases, telling a patient ‘you have got cancer’ can be morally harmful. When such disclosures are made to patients whose cultural values and beliefs render such frank disclosures taboo it may inadvertently trigger deeply held negative beliefs and expectations about the disease and its pathway. This, in turn, may not only have a profoundly negative impact on the patient’s will to live, but even shorten their life expectancy. In other words, truth telling in such cases may serve as a catalyst for a nocebo-induced premature death or at least an unexpected (and unexplained) worsening of the patient’s medical condition. Although these risks have been contemplated in the literature, health professionals – including nurses – remain relatively unaware of the nocebo effect and unwittingly contribute to it in their day-to-day practice, for example, by refusing requests from family members not to disclose deadly cancer diagnoses to their relatives, such as occurred in the examples given in this chapter. The question remains, however, of why ‘cancer’ in particular has the potential to trigger a nocebo effect.
In response to the case of ‘Mr G’, Kanitsaki (1989a : 46) explains that, during the 1950s and 1960s, rural Greece had virtually no hospitals, and that if people required treatment for serious illness they would have to travel great distances to the nearest cities. She goes on to point out that, because of this, as well as because of scepticism about the ability of scientific medicine to treat diseases effectively, people from rural areas would seek hospital treatment only as a last resort. Kanitsaki explains (p 47):
the reluctance to frequent doctors and hospitals was exacerbated by a general dislike of hospitals, rumours about the lack of nursing care and unkind nursing staff, and a fear of cities generally. Pressures of local work demands, a lack of economic resources, and the probability of having to travel alone and thus without the protection, support, and physical presence of the family, also militated against scientific medical services being used by rural community members.
As a result of this reluctance – and, indeed, inability – to access credentialled medical services, many people suffering from cancer-related illness did not receive the optimal treatment available, and as a result frequently died painful and agonising deaths ( Kanitsaki 1989a ). It is the memories of these kinds of cancer-related deaths, and related beliefs and habits that have literally become frozen in times past ( viz a ‘fossilised’ or ‘frozen’ culture), that many rural Greek immigrants have brought with them to Australia and which persist to this day (see Irwin 2007 ). Kanitsaki explains (personal communication) that many post WWII Greek immigrants of this background simply may not have any experiential knowledge of, or even a conception of, the kind of treatment and care that is currently available in Australia; thus even mentioning the word ‘cancer’ is sufficient to trigger in ill persons an overwhelming sense of hopelessness, which ultimately finds its expression in their losing their will to live. Under these circumstances, to tell such patients ‘You’ve got cancer’ – no matter how benevolent the intention in doing so – would probably be sufficient to trigger the nocebo phenomenon, resulting ultimately in the ill person’s premature death ( Johnstone & Kanitsaki 2009a ; see also Zamanzadeh et al 2013 – reporting the experiences of cancer disclosures by Iranian patients, their families and physicians).
The way to avoid this disastrous situation is for the patient to be spared the information likely to stimulate the nocebo phenomenon, and for the patient’s family to be respected as having the surrogate authority to decide – in the moral interests of and for the wellbeing of their sick loved one – whether , when , where , how and by whom information about the diagnosis of a serious illness and poor prognosis will be given ( Johnstone & Kanitsaki 2009a ). A major moral motivation for this is to avoid drastically and negatively altering the ‘patient’s view of his or her own future’ ( Kazdaglis et al 2010 : 443) and thereby undermining their hope – that is, that they will be well cared for and supported, will live longer than expected, will be able to ‘find meaning in their own life and worth’ and the like ( Clayton et al 2008 : 655). By maintaining the patient’s hope, his / her ability to continue making important life-interested choices is also maintained, thus ipso facto maximising their autonomy. In sum, maintaining hope is the linchpin to promoting autonomy ( Johnstone & Kanitsaki 2009a ). This is because without hope there is simply nothing left to choose for .
Interestingly, research has shown that, even in contemporary Greek society, truth-telling about a diagnosis of serious life-threatening illness (especially cancer-related illness) is still viewed by many Greeks (urban as well as rural) as being harmful and hence ‘undesirable’, on the grounds that it could undermine hope and the will to live ( Dalla-Vorgia et al 1992 ; Georgaki et al 2002 ; Kazdaglis et al 2010 ; Mystakidou et al 1996 ).
It should be noted that this moral world view is not held exclusively by Greeks of rural or traditional cultural backgrounds. People of other traditional cultural backgrounds and cultural contexts (e.g. Iranian, Pakistani, Japanese, Italian, Korean, Chinese) also believe that, in some circumstances, patients should not be told that they have a serious life-threatening illness (especially cancer) and that to do so would be harmful (see, for example, Grassi et al 2000 ; Irwin 2007 ; Jafarey & Farooqui 2005 ; Karim 2002 ; Kwak & Haley 2005 ; Lee & Wu 2002 ; Locatelli et al 2013 ; Macklin 1998 ; Mo et al 2012 ; Pellegrino 1992 ; Sato et al 2012 ; Seyedrasooly et al 2014 ; Surbone 1992 ; Tai & Lin 2001 ; Zamanzadeh et al 2013 ). The following anecdote shows this.
The case concerns an elderly non-English-speaking Italian man who, like Mr G, had emigrated to Australia in the 1950s. He was admitted to hospital for tests, which later confirmed a cancer diagnosis. Although the man’s family explicitly requested that their father not be given any information about the test results if they were positive, an interpreter was called in their absence and the man was told of his cancer diagnosis and poor prognosis. This information caused the man to become extremely distressed and, as his son commented later, ‘The life just went out of his eyes and we knew he would die very soon.’ The son, who was Australian born and a qualified pharmacist, decided in consultation with the rest of his family to remedy the situation. This he did by contacting Italian-Australian friends who worked as doctors at the hospital where his father was a patient and arranging for all his father’s tests to be repeated. His friends agreed to explain to his father that the tests needed to be repeated because ‘there had been a terrible mistake’ and that ‘his earlier test results had got mixed up with someone else’s’. They later returned to tell the man that his tests showed he in fact did not have cancer. The son explained that his father was told he still needed medical treatment, but that he would ‘be all right’. Ultimately, the family took their father home and cared for him. He continued to live well beyond the time limit suggested by his poor prognosis and, in fact, was still alive at the time the anecdote was being shared – 18 months after being told that he would not live very long. The son attributed this to the fact that they were able to convince their father all was not hopeless, which in turn had the effect of restoring his will to live. In short, the son’s actions reversed his father’s sense of hopelessness, and thus promoted rather than undermined his father’s autonomy.
Interestingly, when I have shared this anecdote with students, many are appalled at the blatant deception that was employed in this case. Others, however, notably those whose parents are from rural Greece or Italy, have expressed enormous relief at the insights this and other cases like it have given them. One postgraduate nursing student, for example, commented (personal communication):
I’ve always felt that if either of my parents should get cancer they should be told their diagnosis. But when speaking of this issue, my mother – who is Italian – has always insisted, ‘No! you must not allow that to happen’. My Australian side of me tells me it is wrong not to tell them. But now I can see it would be wrong to tell them, and that my mother is right. I can live with this now. It is such an enormous relief. I am no longer in a dilemma. Thank you.
The comments of this student are included here because, among other things, they demonstrate the very practical help that adopting a cross-cultural view of ethics can offer; of particular note, they help to support the view that, by tying ethical views to the cultural traditions that inform them, we will be in a much better position to embrace morality as an experience rather than as an abstraction ( Marshall 1992 : 53–7), and that, by embracing morality as an experience rather than an abstraction, we can avoid falling prey to the unhelpful, idle fantasies of moral fiction which, as Elliott (1992 : 2) suggests, are suited more to the purposes of intellectual convenience than to resolving genuine practical difficulties in the concrete circumstances of life. The student’s comments and, indeed, the anecdotes themselves also show, to borrow from Cortese (1990 : 157), that ‘relationships … are the essence of life and morality’, and that to view morality simply as conceptions of abstract reified rational principles is ‘to remove us from the real world in which we live, and separate us from real people whom we love’. The lesson to be learned here is that, unless we embrace morality as an experience rather than as an abstraction, what we will end up with is only a concept of morality and not morality itself. Also, borrowing again from Cortese (1990 : 158), unless we have a ‘deep sense of relationship, we may have a conceptualisation of the highest level of justice, but we will not be moral’. The point is that, without relationships, justice – morality – ‘contains no system of checks and balances. It becomes primarily an end in itself without regard to the purpose of morality’ ( Cortese 1990 : 158).
Although only the principle of autonomy has been considered here, the other principles considered in Chapter 3 (non-maleficence, beneficence and justice) could all be examined along similar lines. We could, for example, ask in regard to each of these principles: ‘From whose perspective are these principles to be meaningfully and appropriately defined, interpreted, analysed and applied?’ In the case of non-maleficence, for instance, meaningful questions can be asked about what constitutes a ‘harm’ in a given culturally constructed clinical context. By whose standards and cultural perspectives is the notion of harm to be measured and evaluated? It is likewise for the principles of beneficence and justice.
Where then does this leave the role of moral principles and culturally different moral viewpoints and approaches in our nursing ethics discourse? In answering this question, it might be useful at this point to consider the nature and implications of diversity or pluralism in moral values and moral worldviews.