Access to health care refers to ‘whether people who are — or should be — entitled to health care services receive them’ (Emanuel 2000: 8). The right to equal access to health care raises questions of distributive justice and of how the benefits and burdens associated with health care service delivery ought to be distributed. It also raises questions of whether people or institutions can be found morally negligent for failing to provide equal access to health care for persons requiring it. Responses refuting this sense of a right to health care typically centre on such arguments as: ‘there is not a “bottomless pit” of health care resources, and somebody has to do without’.

Specifically, the ‘scarce resources, but unlimited wants’ argument tends to be constructed as follows:

The ultimate conclusion drawn from these premises — the ‘bottom line’, so to speak — is that, inevitably, choices will have to be made. In particular, borrowing from Sheehan and Wells (1985: 59), choices will have to be made about:

It remains an open question, however, whether we have to accept the premises of this ‘scarce resources, but unlimited wants’ argument and, further, whether we have to accept its apparent ‘inevitable’ conclusions. It is far from clear that we do have to accept them — particularly when the politics of health and health care resource allocation are considered fully, including the vested and powerful interests that the whole health and health care economics debate is serving. Further, it is also open to serious question whether we are obliged to accept that economic principles ought to supplant morality as the ultimate test of conduct, as an economic rationalisation approach to health care dictates. Human life is not something that can be reduced, like an object, to mere economic worth, and as moral beings we ought to resist attempts to do so; if we do not resist, we risk seeing ‘worthless’ human beings (increasingly characterised as ‘unproductive burdens on society’) denied the health care entitlements they would otherwise be entitled morally to receive.

It is important to recognise that the issue of resource allocation goes far beyond the simple question of merely how to allocate dollars and cents. It involves much broader questions of how to measure quality of life, efficacy of health care and medical treatment, and quality of care, and of how to calculate cost-effectiveness, as well as complex socio-cultural questions pertaining to power, politics and profit (see David Lindorff’s controversial and provocative text Marketplace medicine: the rise of the for-profit hospital chains [1992]). Fundamentally, it also involves questions of how best to promote health, not merely access to health care services in ‘bricks and mortar’ hospitals (Faden & Powers 2006; Johnstone 2002b; Teays & Purdy 2001; Emanuel 2000).

Unless nurses address these other broader questions — both academically and professionally — they will never be in a position to offer a convincing account of why health care (whatever form this may take), not merely hospital or medical care, needs to be better recognised and why it must be more appropriately resourced. A strong stand must be taken on the need to recognise and to fund the promotion of health better (not just health care services), and there is considerable scope to suggest that it would be appropriate for the nursing profession to lead such a stand (see also Christensen et al 2001). More than this, the nursing profession has a moral obligation to lobby effectively for the community as a whole, and the individuals who comprise it, to have better access to the processes that promote health, not merely to hospital or medical care and related services (Johnstone 2002b; Christensen et al 2001).

The right to have access to appropriate care is a second sense in which a right to health care can be claimed. This sense raises important questions concerning the cultural competency and cultural safety of care (see Department of Health and Human Services [DHHS] 2001a, 2001b; Johnstone & Kanitsaki 2007a, 2007b; Papadopoulos 2006) as well as its ability generally to accommodate people’s personal preferences, health beliefs, health values and health practices. As examples given in Chapter 4 of this book have already shown, failing to provide health care in a culturally appropriate, responsive and informed manner can have harmful consequences (clinically, legally and morally) (see also Johnstone & Kanitsaki 2006b; Smedley et al 2003). Other examples given throughout this book will lend further weight to claims that failure to provide people with access to appropriate care can result in otherwise preventable adverse outcomes for both patients and health service providers alike.

Many other examples can be given here. The complementary therapy movement, for instance, has posed all sorts of new dilemmas for the scientific health professional, particularly in instances where patients prefer to try scientifically ‘ unproven’ vitamin or herbal remedies, meditation and other ‘alternative’ therapeutic agents for serious diseases, rather than risk the known and unpleasant side effects of more orthodox medical treatments. To some extent this type of problem has been overcome on account of alternative therapies being better researched, and more widely accepted by health professionals. Today, it is not uncommon for patients to receive a combination of orthodox and unorthodox treatments (e.g. performing surgery as well as administering vitamin and herbal therapies, or administering orthodox drugs as well as performing spinal manipulation, acupuncture and acupressure, facilitating meditation, and the like).

Another aspect of ‘appropriate care’ entails patients having access to people (lay folk and professional) of their own choosing. It also includes patients’ entitlements to seek a second medical opinion, to refuse a recommended medical therapy or folk therapy, to choose an alternative health therapy, to be surrounded by family and friends, to have unrestricted visiting rights, and to decline to be ‘ordered’ to do anything they do not wish to do (including getting out of bed, having a shower every day, and taking prescribed medication). As the Australian Consumers’ Association (1988: 16) pointed out long ago, patients do not need a doctor’s or nurse’s ‘permission’ (to be distinguished here from advice) for anything!

If nurses are to respond to this sense of a right to health and health care, they need to gain knowledge and understanding of their patients’ health beliefs and health practices and to negotiate ways in which these can be accommodated and met appropriately.

A right to quality care is the third sense in which the right to health care can be claimed. This sense raises questions concerning the accountability, responsibility and competency of health professionals and health care providers, and about the standard of care that is actually delivered. Not only are practical and technical skills at issue here, but also attitudinal factors such as a health care provider’s attitude towards patients as human beings with needs and interests, who are entitled to participate in decision-making concerning their care. A claim to receive quality care also raises questions concerning what should be done in the case of the ‘impaired professional’— that is, someone who functions below an otherwise acceptable professional standard.

Quality health care as a right is an ambiguous and complex notion. Nevertheless, an attempt must be made to understand and use it in a meaningful way. This can be achieved by appealing to the agreed standards of the profession, experience, commonsense (e.g. concerning the distinctions that can be readily made between ‘quality care’ and ‘substandard care’), formal quality assurance processes, formal measures of patient outcomes, and the like. The task for the nursing profession is to ensure that health care delivery never falls to a level that compromises patient safety and wellbeing; nurses in many parts of the world have already demonstrated their willingness to ‘blow the whistle’ or to take strike action when patient safety is compromised by substandard conditions and resources (some examples of which will be considered in Chapter 13 of this book).

It is generally accepted that all people receiving health care have the right to be safe (Kohn et al 2000; Sharpe 2004). This right has been interpreted to mean ‘the right to be kept free of danger or risk of injury while in health care domains’, which in turn has been further interpreted as entailing ‘a correlative duty on the part of health service providers to ensure that people who are receiving care are kept free of danger or risk of injury while receiving that care’ (Johnstone & Kanitsaki 2007c: 186; see also Johnstone 2007a, 2007b). These moral requirements are unremarkable in that they ‘reflect the well-established principle in health care of “do no harm” and the associated moral duty on the part of health care providers to avoid commissions and omissions that could otherwise result in preventable harm to patients’ (Johnstone 2007b: 82). Underpinning this stance is the universal recognition that ‘people generally have a special interest in their significant moral interests (e.g. to life, quality of life, dignity, respect) in not being harmed and that this special interest ought to be protected — provided this can be done without sacrificing other significant moral interests’ (Johnstone 2007b: 82).

The International Council of Nurses (ICN) regards patient safety as being ‘fundamental to quality health and nursing care’ and asserts that all nurses have a fundamental responsibility to ‘address patient safety in all aspects of care’, including (but not limited to) ‘informing patients and others about risk and risk reduction’, ‘advocating for patient safety’ and ‘reporting adverse events to an appropriate authority promptly’ (ICN 2002: 1). In keeping with the principles of a ‘system approach’ to human error management, the ICN explains:

A noteworthy feature of the right to safe care is the impetus it is providing, via its encompassment in the new patient safety movement, for the development of a non-punitive systems approach to human error management in health care and to reducing the incidence and impact of preventable adverse events in patient care domains. Although the global push to improve patient safety is not without various tensions and controversies (see Johnstone 2007a, 2007b; Johnstone & Kanitsaki 2006a, 2007d; Sharpe 2004), it is unequivocally heralding a new global understanding, commitment and approach to the historical maxim of ‘do no harm’ and to designing and implementing better systems for reducing the incidence and impact of preventable adverse events and the harms that can and do result from these to all concerned (WHO 2005a, 2005b, 2006).

It can be seen that all four senses of the right to health care pose a significant challenge to the nursing profession. As far as the right to equal access is concerned, nurses have much to contribute. Nurses know very well the areas in which access to health care has effectively been denied to people, and why (e.g. lack of appropriate resource allocation, inappropriate structuring of health care delivery, obstructive institutional policies and legal laws, cultural and language barriers). Despite their knowledge and experience in relation to these matters, however, nurses are not always included in the processes for deciding important policy or health resource allocation matters.

Nurses must directly participate in high-level decision-making concerning health care matters, an imperative already well argued for by Paul Gross (1985) over two decades ago. If nurses fail to influence policy and decision-making, the prospects for patients’ rights, not to mention the nursing profession’s ability to promote and protect these, will remain limited.

The right to health care, in the senses pertaining to appropriate, quality and safe health care, also poses significant challenges to the nursing profession, in terms not only of its own standards, but also of those applied in health care contexts generally. If the nursing profession is to succeed in providing appropriate nursing care (a subcategory of health care), it needs to pay careful and continuous attention to developing its curricula and to ensuring that its members are educationally prepared to meet and to respond to the needs of society, and in particular the needs of the culturally and individually diverse people comprising it. As well as this, the nursing profession must pay careful attention to developing reliable mechanisms for guiding its members in their attempts to deliver safe, quality, therapeutically effective, culturally competent and morally accountable care, and for censuring those of its members who fail to do so.

Nurses, individually and collectively, have a moral responsibility to respond to the demonstrable threats that are mounting against people’s rights to health and health care. How well they can and will succeed in fulfilling this responsibility, however, will depend on how they view justice and the demands it places on them. As Dyck (2005: 322) reminds us, ‘In the end, health care is one of the areas that test whether members of the community in question are aware of, and willing to meet, the moral demands of the moral requisites of community.’ Moreover, in the context of claims to a ‘decent minimum of health care’:

Meanwhile, what we as nurses do about health care reflects what kind of profession we are, and what we think ought to be done about health care reflects what kind of profession we think we ought to be.

The doctrine of informed consent, although having a profound ethical dimension, is essentially a legal doctrine developed partially out of recognition of the patient’s right to self-determination and partially out of the doctor’s duty to give the patient ‘information about proposed treatment so as to provide him or her with the opportunity of making an “informed” or “rational” choice as to whether to undergo the treatment’ (Robertson 1981: 102; see also Beauchamp & Childress 2001; Gert et al 1997; Kerridge et al 2005).

In distinguishing the differences between a legal and a moral approach to informed consent, Faden and Beauchamp (1986) explain that the legal law’s approach to informed consent ‘springs from pragmatic theory’, which focuses more on a doctor’s duty to disclose information to patients and not to injure them. By contrast, moral philosophy’s approach to informed consent ‘springs from a principle of respect for autonomy that focuses on the patient or subject, who has a right to make an autonomous choice’ (p 4).

Whether such a clear-cut distinction can be drawn between a legal and a moral approach to informed consent is a matter of some controversy, however. The moral demand to respect autonomy is clearly the prime motivator of the doctor’s duty to disclose information, and the moral principle of non-maleficence is the prime motivator of the doctor’s duty not to injure or harm patients. It seems that, while the moral and legal approaches to informed consent can be loosely distinguished, they are nevertheless inextricably linked. It is this linkage which highlights the other important functions, besides the promotion of patient autonomy, that the application of the doctrine of informed consent also serves, namely those of protecting patients, avoiding fraud and duress (i.e. as occurs when information is not disclosed), of encouraging self-scrutiny by health professionals, of promoting ‘rational’ and systematic moral decision-making, and of involving the public ‘in promoting autonomy as a general social value and in controlling biomedical research’ (Capron 1974; Gert et al 1997; Beauchamp & Childress 2001).

There is no question that consent practices have improved considerably over recent decades. Health professionals have increasingly recognised the benefits of ensuring that patients (and their proxies) are informed appropriately about their care and treatment options, and patients (and their proxies) are more willing to question the information that they have been provided in order to inform their choices and consent to treatment (Chaboyer 2000; Kerridge et al 2005; Tweeddale 2002). Nevertheless nurses continue to witness instances in which consent practices have been questionable and where patients’ rights to make informed choices have been violated. Patients who do not speak or read English proficiently are particularly vulnerable in this regard, as illustrated by the following case of a 66-year-old Greek-born woman (‘Mrs G’) who had been admitted to hospital for elective surgery to treat a kidney disorder (Kanitsaki 1992). In this case informed consent was not obtained. Describing the circumstances surrounding the failure to obtain an informed consent from this woman, Kanitsaki writes (1992: 2–3):

More recently a 2005 Australian study has suggested that, in some situations, because of not having access to qualified health interpreters, doctors sometimes rely on diagnostic testing (often subjecting patients to an unnecessary barrage of expensive diagnostic investigations) rather than direct diagnostic questioning of patients to find out what might be wrong with them. Consent practices in these situations were, at best, ‘dubious’. The study found that a testing rather than a communicative questioning approach to medical care was most likely to occur in situations where attending health professionals took the stance of treating patients ‘as if’ they were unconscious — sometimes referred to colloquially as ‘veterinary medicine’ (Johnstone & Kanitsaki 2005: 152).

One reason why consent practices in Australia and New Zealand are problematic relates to the model they are based on. Unlike the United States (US) and Canada, which use a reasonable patient standard (also called ‘reasonable person standard of disclosure’) model of consent (emphasising trespass and battery), Australia and New Zealand tend to use a reasonable doctor standard (also called ‘professional practice standard of disclosure’) model (emphasising negligence and malpractice) — although, following the High Court of Australia case of Rogers v Whittaker (1992), Australia has moved somewhere between the two, adopting a ‘subjective person standard’ (emphasising a ‘duty to disclose’ information that an individual patient may require (Kerridge et al 2005: 217–18; see also Russell 1987: 18). Understanding the difference between these three models is important to any debate on informed consent, and I will briefly outline them here. (For a more detailed discussion on the legal aspects of informed consent to medical treatment, see Andrews 1985; Dickens & Cook 2004; Faden & Beauchamp 1986; Forrester & Griffiths 2005; Kerridge et al 2005; Kirby 1995; Law Reform Commission of Victoria et al 1987).

In the reasonable doctor standard model of consent, a consensus of reasonable and established medical opinion provides the ‘objective’ measure. On the basis of this model, a doctor has the duty to use reasonable skill and may withhold information if, in the doctor’s opinion, its disclosure would be injurious to the patient. If patients are to successfully sue for damages on account of a failure to disclose information relevant to the consent process, they have to show, first, that the doctor failed to provide information and advice to a patient that accords with the ‘practice existing in the medical profession’ (Law Reform Commission of Victoria et al 1987: 8), and, second, that injury was suffered as a (causally) direct result of this negligence. In establishing whether the doctor did in fact use ‘reasonable skill’, the law would appeal to the reasonable doctor standard model and would ask what most or many reasonable and competent doctors in a given particular branch of medicine would do and say in such circumstances; that is, what would be considered ‘accepted medical practice’ in this situation? If there were conflict, the answer to this question would be sought from an expert medical witness, or witnesses, who would testify what they, as reasonable and competent doctors in a particular branch of medicine, would probably do or say in the circumstances under question.

For example, the question of whether a doctor should have disclosed to a patient a 0.1–0.2% risk of quadriplegia in cases involving cervical spinal surgery would ultimately be decided on the basis of whether other reasonable and competent doctors in the field usually disclose this information. If it could be established that other reasonable doctors do not disclose to their patients a 0.1–0.2% risk of quadriplegia in cases involving cervical spinal surgery, it is likely that a doctor who failed to disclose such information to a patient would not be found negligent or causally responsible for the patient’s injuries in the case of a material risk manifesting itself (such as quadriplegia).

In the reasonable patient standard model, on the other hand, the standard is set ‘by reference to hypothetical behaviour of adult, competent people in the sorts of situations which are presented to courts and other tribunals for decision’ (Law Reform Commission of Victoria et al 1987: 8). On the basis of this model, a doctor has the duty to disclose to the patient all the information necessary to making an intelligent and ‘rational’ choice (including information pertaining to small material risks). For example, consider the hypothetical case of a patient who has suffered the complication of quadriplegia following a cervical spinal fusion. Consider further that the patient claims that, had information been given about the associated risk of quadriplegia, the operation would never have been consented to in the first place. The famous Sidaway case provides an instructive example of this kind of situation (Law Reform Commission of Victoria et al 1987: 3–4, 37–9; Andrews 1985: 14). In the hypothetical case, the question of whether a doctor should have disclosed to the patient a 0.1–0.2% risk of quadriplegia in cases involving cervical spinal surgery would ultimately be decided on the basis of whether:

If it could be established, in this instance, that the patient would not have consented to the procedure, and that the patient’s declining to give consent would have been consistent with what a hypothetical reasonable and competent adult would do in a similar situation, then the patient’s original consent would be vitiated and the doctor would be found guilty of trespass and battery.

In the subjective person model, the standard is based on the requirement to tell ‘each individual patient exactly what they would wish to know’ [emphasis original] (Kerridge et al 2005: 218). According to this standard:

The influence of this standard has been most evident in the High Court of Australia case of Rogers v Whittaker (1992), involving a 47-year-old woman who developed sympathetic opthalmia and who became completely blind after undergoing reparative eye surgery for a penetrating eye injury. This case is widely credited with representing the Australian position ‘not only in relation to the standards of the duty of care for health professionals, but also in relation to “whether the standards of care is a matter of medical judgment only”’ (Forrester & Griffiths 2005: 96). Evidence was given at the court hearing that the treating surgeon told the woman that the surgery would improve both her appearance and her vision; it was further revealed that the surgeon regarded the risk of sympathetic opthalmia as being so remote that he did not disclose it to her. The Court, however, took a different view and affirmed that health professionals (and the surgeon in this case) have a stringent duty to disclose information that an individual patient may require — including being warned about the material risks of given treatments — ‘even when the patient does not seek information through specific questions’ (Kerridge et al 2005: 218; see also Forrester & Griffiths 2005: 96). In North America a similar stance has been assumed with legal scholars arguing that, in addition to being given information about material risks, patients should also be given information on how to ask any additional questions that may occur to them during the ongoing process of their care (Dickens & Cook 2004: 313).

All models depend on the further consideration of a patient’s rational or legal competence — a matter that, rightly or wrongly, only the courts can decide (the question of patient competency will be considered later in this discussion).

Whatever the legal considerations and arguments for or against these models, from a moral point of view (and, indeed, a pragmatic point of view) neither is free of difficulties. For example, the reasonable doctor standard can be unreliable on account of doctors often being reluctant to testify against their colleagues. Commenting on Australia’s medical defence unions, Stephen Rice writes (1988: 124):

The reasonable patient and ‘subjective person’ standards, however, can also be unreliable. For example, who is to say what is to count as a ‘reasonable’ patient, hypothetical or otherwise? Is it realistic to believe and accept that an abstract ‘hypothetical reasonable and competent adult’ — divorced from any cultural, social, historical and spiritual context of living — is able to represent reliably and truthfully what an actual person whose ‘reasonableness’ is at issue would ultimately desire? What one patient or ‘subjective person’ might consider reasonable, another might equally reject; and vice versa. The case of Jehovah’s Witnesses and their well- recognised refusal to accept life-saving blood transfusions is a point in question. It is not difficult to imagine a ‘reasonable patient’ of the Jehovah’s Witness faith refusing a blood transfusion against an overwhelming body of public opinion that such a refusal was ‘unreasonable’ and even ‘mad’ or ‘idiotic’.

The case of children (mature minors) reasonably refusing burdensome medical treatment against adult opinion is another example. A particular example of this can be found in the controversial English case involving a 15-year-old girl who underwent a heart transplant by order of a British High Court. The girl did not want the transplant explaining ‘I would feel different with someone else’s heart — that is a good enough reason not to have a heart transplant, even if it saved my life’ (Boseley & Dyer 1999: 19). Treating doctors and the Court disagreed, however, and the girl’s wishes were overridden on the ‘reasonable’ grounds that the heart transplant would save her life.

In dealing with these and other difficulties, as well as with other more general objections which may be raised against the doctrine of informed consent, it is important not to lose sight of the various theoretical perspectives underpinning and justifying the right of people to make informed choices about their care and treatment. For instance, key to both the legal doctrine and moral right of informed consent is (1) the liberal democratic notion of the sovereignty of the individual, and (2) ethical principlism, considered under separate subheadings below.

Informed consent rests heavily on the view that the individual is sovereign alias the sovereignty of the individual. This highly individualistic notion characterises the person (patient) as a solitary competent individual who possesses ‘a sphere of protected activity or privacy free from unwanted interference’; by this view, although ‘influence is acceptable’, coercion in any form is not (Kuczewski 1996: 30). Kuczewski explains that (p 30):

One serious and significant implication of this view is that the patient’s family, friends and/or chosen carers (acknowledging here that not all patients have families or, if they do, desire the involvement of their families) are conceived ‘as comprising competing interests’; they are also seen as having no entitlements whatsoever in regard to any consent to medical treatment processes that the ‘sovereign individual’ might otherwise engage in (Kuczewski 1996). This may help to explain some of the tensions examined previously in Chapter 4 (pages 78, 80, 91) in regard to family members of traditional cultural backgrounds seeking active participation in consent to medical treatment processes and the reluctance by some doctors and nurses to involve these family members in such processes.

Bioethicists and clinicians (particularly palliative care physicians) are, however, rethinking their traditional opposition to the involvement of family or chosen carers in consent to treatment practices (Chaboyer 2000). There is increasing recognition that illness can seriously undermine the patient’s capacity to make prudent self-determined choices (autonomy) and to be an effective judge and guardian of his or her own self-interests. This has been matched by an increasing questioning of the traditional legalistic approach to informed consent that, among other things, presupposes that the values of the ‘sovereign individual’ are well developed, fixed and adequate to the task of choosing between difficult treatment options, and that all the chooser needs in order to make an informed choice is ‘information’ (Gert 2002; Kuczewski 1996).

Increasingly, as previously discussed in Chapter 4 of this book, family members and chosen carers are recognised as having a vital role to play in consent processes and care of loved ones. By being intimately acquainted with (‘knowing well’) the patient, family members or chosen carers are able to provide appropriate and meaningful feedback to their loved ones, and to generally assist in ‘reality checking’ their loved one’s choices and the values, beliefs (new and old), and deliberations influencing these choices. In sum, the involvement of family members and/or chosen carers in consent to treatment processes can play a vital role in restoring the otherwise diminished autonomy of their sick loved ones (Kuczewski 1996). Furthermore, by fulfilling this role, they are also able to strengthen the bonds of their relationship with the patient and with each other — in short, to express their care of and for each other.

The ultimate conclusion of this new approach is this: we need to reconceptualise informed consent as a shared rather than as an individual decision-making process (Kuczewski 1996).

Informed consent also rests heavily on ethical principlism (discussed in Chapter 3 of this book), both for its content and justification as an action guide. The principles of particular importance here include those of:

It should be noted that while autonomy is a value underlying the doctrine of informed consent it is not the value, nor an absolute value. As Faden and Beauchamp (1986: 18) point out, at best autonomy is only a prima-facie value, and to regard it as having overriding value would be both historically and culturally ‘odd’. This is not to say that autonomy does not have a significant place in a moral approach to informed consent. It merely means that it does not have a sole place, and can be justly restricted by other competing moral principles, such as those already mentioned.

Having now reviewed the function and theoretical underpinnings of informed consent, let us proceed critically to examine the constituents and nature of informed consent.

It is generally recognised within bioethics that disclosure, comprehension, voluntariness, competence and consent itself form the analytical components of the concept of informed consent (Faden & Beauchamp 1986: 274).

Morally speaking, for a consent to be regarded as informed, it must satisfy a number of criteria, including those relating to the informational aspect of the consent and those relating to the giving of consent itself. Beauchamp and Childress (2001: 77–98) argue that for consent to be informed: there must be a disclosure of all the relevant information (including both benefits and risks); the patient must fully understand (comprehend) both the information which has been given and the implications of giving consent; the consent must be voluntarily given (i.e. the patient must be free of coercion or manipulation); and, lastly, the patient must be competent to consent (i.e. be both ‘rational’ and prudent). Faden and Beauchamp (1986: 54) argue along similar lines, and recommend what they believe are less ‘over demanding’ and plausible criteria, notably:

It needs to be noted that patients frequently do not realise that in giving consent they are not merely acknowledging the receipt of information concerning a recommended medical treatment or procedure, but are also actually giving permission to an attending health professional to go ahead and perform the treatment or procedure in question.

Faden and Beauchamp’s (1986) foundational work and theory of informed consent is probably one of the most comprehensive to date, and one which, although written from the cultural perspective of the US, deserves to be given serious attention by those furthering the informed consent debate in Australia, New Zealand and other common law countries. As well as advancing their ethical theory, these authors also make a number of useful practical suggestions on how informed consent practices could be made more ‘workable’.

It should be noted that the doctrine of informed consent has been the subject of much controversy, most notably among health professionals. Common objections include:

These and similar objections are, however, difficult to sustain in the face of research findings, anecdotes and professional experience. For example, it is well recognised that people in stressful and unfamiliar situations are vulnerable both to information overload and short-term memory loss. The stress of being admitted to hospital; of coping with feelings of pain, fear and anxiety; of being separated from the familiarity of one’s home, family and friends; the general disruption of one’s life, not to mention the effort required to adapt to a new (hospital) environment characterised by strange smells, sights, noises, tastes, routines, faces, procedures and sensations — may all contribute to lessening an individual’s capacity to pay attention to and to recall information that has been disclosed. It is thus understandable that patients might sometimes forget or have their capacity to understand the information that has been given to them compromised by these factors.

To complicate matters, health professionals seeking consent or giving information do not always manage their encounters with patients very well. Some use a hurried, uninterested and sometimes intimidating approach when seeking a patient’s consent. When seeking consent from a patient, health professionals may fail to give due attention to such things as: controlling their tone of voice, choosing a suitable time and place to approach the patient, ensuring privacy, using the appropriate body language and facial expressions, choosing the right words, avoiding complicated jargon, sitting at the patient’s level, being generally respectful, and so on.

When dealing with non-English-speaking patients, these problems are considerably worse. For example, health professionals may shout unnecessarily (a problem which also sometimes occurs when they are dealing with blind or physically handicapped people who nevertheless have perfect hearing), or they may use inappropriate body language and facial expressions, use the wrong intonations in speech, or use terms which cannot be readily interpreted into the patient’s spoken language.

As far as patients who do not want to know the details of an impending medical procedure are concerned, there are few who seem to fit into this category. In some instances patients have declined information (on the basis of personal and cultural health beliefs and practices), but even then only certain select pieces of information have been declined; in these instances, patients have not voiced a blanket and unconditional rejection of all relevant information. In many instances, what has superficially appeared to be a ‘refusal’ was in fact more a demand that the information be given in a culturally appropriate manner (see discussion in Chapter 4 of this book). If, however, patients do make an informed and authentic choice not to receive certain relevant pieces of information, and on reflection are not open to changing their minds about receiving the information in question, then to give this information to the patients would certainly count as a paternalistic act (the subject of ‘paternalism’ will be considered shortly below).

The objection that patients would not be able to understand the necessary information in order to make an intelligent and informed choice is also difficult to sustain. It is sometimes difficult to avoid the impression that the claim that a patient cannot understand is more an assumption than a matter of sound deliberation and determination. Buchanan (1978: 386), for example, argues that to assume a patient would not understand given information is to make a ‘dubious and extremely broad psychological generalisation’, which, of course, ordinary doctors and nurses are not particularly qualified to make. Faden and Beauchamp (1986) also argue that most patients are able to understand the information given to them, and, what is more, that a patient’s level of understanding can be ascertained and measured.

Even if patients do not fully understand the information given, this does not always imply that it is the fault of the patient. A patient’s inability to understand may be directly related to a doctor’s or a nurse’s inappropriate behaviour and communication (Roth et al 1983: 176). The onus then is on those seeking to obtain consent to improve their approach to patients, and to presume a patient’s ability to understand information rather than an inability to understand. On this point Muyskens (1982a: 119) argues:

Just as there is no compelling evidence to suggest that patients would not understand information disclosed to them about a proposed medical or nursing procedure, there is no compelling evidence to suggest that patients would be unduly injured or harmed by disclosures. Bok (1980) has long contended that very few patients withdraw their consent when informed of material risks or other so-called ‘harmful’ pieces of information concerning a proposed medical procedure. She further contends that in fact ‘it is what patients do not know but vaguely suspect that causes them corrosive worry’ (Bok 1980: 234).

Buchanan (1978) is even more critical of the view that the disclosure of information material to a treatment decision may cause harm to patients, arguing that such a view reeks of nothing more than wide and unfounded ‘psychiatric generalisations’, which ordinary doctors and nurses are not qualified to make. He argues further that even qualified psychiatric specialists would probably find it very difficult to judge correctly whether a patient would be significantly harmed by disclosure.

The ‘information causing harm’ objection, of course, also ignores the point that, even if a patient refused to undergo a recommended medical procedure on the basis of information received about certain material risks, this is, after all, something which any competent patient is morally entitled to do — whatever the risks involved and regardless of what others might think of their refusal (see also Tweeddale 2002; Forrester & Griffiths 2005; Kerridge et al 2005). At best, all attending health professionals can morally do is to persuade patients non-coercively about the known benefits of undergoing a given medical procedure; but they are not entitled to interfere with the patient’s choice if such persuasion fails (Faden & Beauchamp 1986).

Even if critics concede that these objections cannot be sustained, the objection still remains that informed consent procedures are impractical because they are unrealistically and unacceptably time-consuming. It is likely that obtaining a voluntary consent (i.e. one free of coercive or manipulative influences) and informed consent from a patient will take more time than obtaining an involuntary and uninformed consent. Nonetheless, health professionals have a responsibility to take the time required to interact and communicate with their patients in a way that facilitates making informed choices and realising morally just outcomes. Moreover, there can be no excuse (except possibly in an emergency life-threatening situation) for denying patients the time needed to deal with an anxiety, to answer a worrisome question, or to be reassured. Patients must have sufficient time to make an adequate decision and must have sufficient time to contemplate viable and real alternatives; anything less may result in information overload and may undermine their ability to make voluntary and informed choices (Faden & Beauchamp 1986: 326).

In a culture so heavily dominated and constrained by considerations of ‘time’, it may be tempting to accept ‘time constraint’ as a valid reason for abrogating one’s moral responsibilities. This, however, is not acceptable morally. Moreover there are many ways in which the difficulties posed by time constraints can be overcome. One possible solution is to involve others (including lawful proxies, family and/or chosen carers) in the processes of transferring and sharing information with patients. While it is obviously and properly the responsibility of treating doctors to obtain informed consents to medical treatment from the patients they are treating, there is nevertheless considerable room to suggest that a collaborative approach to meeting patients’ information needs would contribute substantially to maximising the patients’ moral interests.

Rightly or wrongly, nurses already play a major, although unacknowledged, role in meeting patients’ information needs. This situation has arisen for many reasons, including the problem that treating doctors sometimes fail, for various reasons, to meet the information needs of their patients. In situations like this, an attending nurse is often the only immediately available person patients (and their families) have to turn to in order to obtain the information they want. Indeed, nurses are very often the ones whom patients ask directly about what to expect of a given or pending medical procedure or treatment. In such instances, nurses can find themselves in a very difficult situation — particularly if an attending doctor will not respond appropriately to a patient’s request for information. The nurses’ dilemma is compounded by the fact that they know they can contribute a great deal to allaying patient anxiety related to knowledge deficits concerning proposed and rendered medical care and treatment options, but do not have the legitimated authority to undertake this role. Thus, if and when they are giving information to patients about medical treatments, nurses know they are ‘taking a risk’, since this could be construed as ‘interfering with the physician–patient relationship’ — as, indeed, has happened in a number of high-profile legal cases (see Johnstone 1994).

Studies have long shown that nurses can greatly assist patients in coming to understand their illness experience and physician directives given during medical consultations (Uyer 1986). One study also shows that the task of giving information to patients and satisfying patients’ information needs is ‘ impossible without systematic collaboration between medical and nursing staff’ (Engstrom 1986, emphasis added). It is clear that this is a matter which requires much greater attention than it has been given up until now with a view towards legitimating the role of nurses in meeting patients’ information needs.

A second obvious strategy which could be used to help resolve the time-constraint problem is to restructure the time frame itself during which consents are usually sought. In elective admissions, consents are usually sought on the day before or evening before a scheduled medical or surgical procedure. The moral disadvantages of this are obvious. As Faden and Beauchamp ask (1986: 325):

Such a short time frame is not conducive to patients exercising voluntary and informed consent. One possible solution — and one that is routinely practised in some areas — would be to give patients all the ‘usual’ information during a pre-admission clinic a week or so before the procedure. In this way, patients have time to go home, contemplate the information received, discuss it with family and friends, formulate any further questions they would like to ask, or even change their minds and decline the recommended therapy or procedure if they so desired. If patients are allowed time to reflect on the information given to them, not only would their consents to treatment be of better quality, but so too would their decisions to enter hospital.

The time factor involved in obtaining consent is crucial to the realisation of morally just outcomes. If sufficient time is not allocated for the purposes of gaining a patient’s consent, a very real risk exists that the voluntary and informed nature of the consent will be seriously compromised, thus having the domino effect of violating underlying moral principles such as autonomy, non-maleficence, beneficence and justice. In other words, a complete moral collapse of the situation could occur. In emergency or life-threatening situations, of course, it is not always possible to seek an informed consent and it could be hazardous to try and do so. The law recognises that in emergency or life-threatening situations consent can be ‘waived’; morality likewise recognises situations in which consent can be justly waived.

The challenge to doctors and nurses and other health professionals is to restructure their thinking on informed consent, and to view it as something which ‘should help overcome the inclination that many people have to yield compliantly to proposals from powerful authority figures’ (Faden & Beauchamp 1986: 372). Faden and Beauchamp (p 305) argue that the questions that all health professionals and policy and law makers should be asking are not what patients should be told or even who should tell them, but: ‘What can professionals do to facilitate obtaining informed consents based on substantial understanding?’ or ‘How can professionals enable patients and subjects to make informed autonomous choices?’

If informed consent procedures are to work and to achieve their desired ends, a number of other practical considerations need to be attended to. First, consent forms should be made available in the patient’s own language and obtaining consent facilitated by the involvement of qualified health interpreters. It was once the practice to ask cleaners or orderlies or kitchen hands who speak languages other than English to interpret for a non-English-speaking patient (see Stone 1991: 4). This situation still arises on occasion despite being proscribed by government policy and deemed as an unacceptable standard of practice (Johnstone & Kanitsaki 2005). One reason why it is regarded as unacceptable practice is that orderlies and cleaners and kitchen hands are neither trained nor credentialed as health interpreters and thus may seriously misinterpret the information being relayed, or may give their own assessment of and interpretation of a question being asked. For example, Olga Kanitsaki (who is Greek-speaking) describes a case involving a Greek-speaking patient. In this case, a cleaner called in to interpret for the doctor exclaimed to the patient, in Greek, ‘Well, if you only have a headache why don’t you take an aspirin? What did you come into hospital for? Why are you bothering the doctor?’ (personal communication). Other studies have likewise found that people used as interpreters in the health care system sometimes ‘edit out’ information that is of importance to the patient’s health care (Brough 2006: 26).

Another problem, and one often overlooked by health professionals, is that orderlies and cleaners and kitchen hands do not have a professional relationship with the patient; thus, involving them as interpreters is tantamount to breaching confidentiality. Who is to know whether these ‘informal’ interpreters will keep confidential the information disclosed during an interpreting session? Since they are not bound by any professional code of ethics, they may not fully appreciate their moral responsibilities not to disclose the confidential information they have become privy to while acting as interpreters.

A second practical consideration is that patients’ consent must be continuously re-evaluated so as to check whether their original consent still holds. This is particularly crucial in situations involving ‘Not For Resuscitation’ directives (also called ‘Do Not Resuscitate’ directives) or refusal to consent to given life-saving therapies. In some instances, the terms of a patient’s original consent may need to be modified. It has been asserted informally by those working in the area that the term ‘informed consent’ should be abandoned in favour of the term ‘informed decision-making’. The rationale given is that the notion of informed consent has an air of finality about it — that is, once consent has been obtained that is the end of the process. With the notion of informed decision-making, however, the connotations are quite different. In contrast, it has an air of ‘open-endedness’ about it — of a process that is ongoing. Given this, it is thought, the notion of informed decision-making, unlike the notion of informed consent, seems to invite the continuous re-evaluation of any decisions made about care and treatment options. Although yet to be fully embraced, this change in thinking is slowly beginning to be reflected in literature on the subject (see, e.g. Dickens & Cook 2004).

A third consideration is that patients must be informed of their entitlement to refuse a recommended medical or nursing procedure, and the opportunity to refuse must always be present without prejudice to the patients — even when refusals may give rise to significant moral distress in care providers (see, in particular, the case study of a competent patient’s refusal of nursing care, including turning and incontinence management, examined by Dudzinski & Shannon [2006a, 2006b], and the related commentary by Tong [2006]). Fourth, patients must be kept up to date on the relevant details pertaining to their cases. Details which are not readily understood should be explained (in understandable language), and reinforced through planned patient health education programs (something that nurses are educationally prepared to undertake).

Lastly, health professionals need to remind themselves constantly that many factors can deter patients from exercising informed and voluntary choices, including, but not limited to, fear of victimisation. For example, patients may fear that if they refuse to give consent to some aspect of the proposed procedure they may be victimised by being denied other forms of treatment or by being verbally and emotionally abused. Other factors include: feelings of guilt where patients might feel, for example, that somehow they ought to give consent for the sake of their families (see Roberts 1987; Hyun 2002); fear of unknown outcomes; frank disagreement and value conflict, where patients might refuse simply because they do not agree with a given recommended medical therapy and would prefer to try an alternative health modality; pain or grief states which can cloud patients’ prudence; ‘rational incompetence’, and an associated inability to exercise self-determining choices; and incompetent or impaired health professionals who may, for instance, be poor communicators, have poor interpersonal skills, be rushed or hurried, or lack the relevant information to give to the patient.

Before concluding this discussion two further issues remain to be addressed — the problem of the so-called ‘rationally incompetent’ patient and medical paternalism.

Critical to satisfying the requirements of informed consent is competency to decide. The issue of competency is, however, controversial and complicated. This is because there is no substantial agreement on the characteristics of a ‘competent person’ or on how ‘competency’ should be measured. Nor is there any legal test of competency that ‘commands general acceptance’ (Gert et al 1997: 131). To complicate this matter further, there is also no substantial agreement on what constitutes rationality which, as has been argued elsewhere, is very much a matter of subjective interpretation (Johnstone 1999a: 122). As Gibson (1976) points out in an early article on the subject, rationality cannot escape the influences of the social patterns and institutions around it and, for this reason, any value-neutral account of rationality is quite inadequate. She further suggests that at most rationality should be regarded as a value, rather than a property that all ‘normal’ people have (Gibson 1976: 193). In summary, the notion of ‘rational competency’ is problematic because there is no precise definition of, or agreement on, what it is.

Even if there was agreement on what constitutes rational competency, there remains the problem of ‘whereby the definition of competence changes in different clinical situations’ (Gert et al 1997: 135). For example, an elderly demented resident may be deemed competent to eat his/her evening meal alone, but deemed not to be competent to refuse treatment (e.g. suturing) of a deep and bloody laceration to his/her arm. As Gert et al (p 132) go on to explain, we need to appreciate that persons as such are ‘not globally “competent” but rather “competent to do X”, where X is some specific physical or mental task’. In other words, competence is always ‘task-specific’ and determining or measuring competence is thus always ‘context-dependent’ (see also Mukherjee & Shah 2001).

Significantly the issue of competency rarely arises in contexts where the patient agrees with and consents to a doctor’s recommended or prescribed treatment. Gert et al (1997: 142) suggest controversially that this is because ‘doctors almost always recommend treatments that it would be rational for patients to choose’. They go on to argue that it is mostly in ‘cases of treatment refusals, especially those that appear to be irrational, that the question of a patient’s competence most frequently and appropriately arises’ (p 142). A good example of this can be found in the much publicised Australian case of John McEwan that occurred in the mid-1980s and which sparked an unprecedented public inquiry into the so-called ‘right to die with dignity’ (Social Development Committee 1987).

John McEwan, a former Australian water-skiing champion, was left a ventilator-dependent quadriplegic after a diving accident at Echuca, Victoria. Throughout his hospitalisation, he repeatedly asked to be allowed to die. At one point, desperate to achieve his wish, he went on a hunger strike and instructed his solicitor to draw up a ‘living will’, which stated ‘that he did not wish to be revived if and when he fell into a coma’ ( Bioethics News 1985: 2). According to media reports, this act led to a psychiatrist certifying him as rationally incompetent, thereby enabling John McEwan to be treated (fed) against his will. The psychiatrist’s judgment was revoked a few days later, however, when John McEwan ‘agreed to end his hunger strike and accept a course of antidepressants’ (p 2).

A little over a year after his accident, and despite still being ventilator-dependent, John McEwan was discharged home. The round-the-clock day care he required was given by family members and friends who had received special training in how to care for him. In the weeks following his discharge from hospital, John McEwan continued to express his wish to be allowed to die (Social Development Committee 1987: 310–11). This prompted the general practitioner who was medically responsible for him to inform the senior nursing assistant that:

During one incident, while at home, John McEwan was observed to be angry at having been reconnected to the ventilator against his wishes. And in another incident shortly before his death, he talked openly with his general practitioner about ‘hiring someone to blow his [John McEwan’s] brains out or kill him as he felt his wish to die was being frustrated’ (Social Development Committee 1987: 316). There was no reason to suspect that John McEwan’s wishes were irrational. Before his accident he had been a committed sportsman and for him the life of a helpless quadriplegic was intolerable.

At four o’clock in the morning on 3 April 1986, John McEwan was found dead by his nursing attendant. At the time of discovery he was disconnected from his ventilator.

It is perhaps easy to think of competency in cases such as this in purely medical or psychiatric terms. In their classic and still frequently cited work, Roth et al (1983) argue, however, that the concept of competency is not merely a psychiatric or medical concept, as some might assume, but is also fundamentally social and legal in nature. They go on to warn that there is no magical definition of competency, and that the problems posed by so-called ‘incompetent’ persons are very often problems of personal prejudices and social biases, or of other difficulties associated with trying to find the ‘right’ words.

The critical issue in developing tests of competency is how to strike a happy balance between serving a rationally incompetent person’s autonomy and also serving that person’s health care, nursing care and medical treatment needs. Also of critical concern is finding a competency test which is comprehensive enough to deal with diverse situations, which can be applied reliably, and which is mutually acceptable to health care professionals, lawyers, judges and the community at large.

Roth et al (1983: 173) suggest that competency tests proposed in the literature basically fall into five categories:

The test of evidencing a choice is as it sounds, and is concerned only with whether a patient’s choice is ‘evident’; that is, whether it is present or absent. For example, a fully comatose patient would be unable to evidence a choice, unlike a semi-comatose patient or a brain-injured person, who could evidence a choice by opening and shutting their eyes or by squeezing someone’s hand to indicate ‘yes’ or ‘no’. The quality of the patient’s choice in this instance is quite irrelevant. One problem with this test, however, is whether, say, the blinking of a patient’s eyes can be relied upon as evidencing a choice; in a life and death situation one would need to be very sure that a patient’s so-called ‘evidencing a choice’ is more than just a reflex.

The test of reasonable outcome of choice is again as it sounds, and focuses on the outcome of a given choice, as opposed to the mere presence or absence of a choice. The objective test here is similar to that employed in law, and involves asking the question: What would a reasonable person in like circumstances consider to be a reasonable outcome? The reliability of this measure is, of course, open to serious question — as previously objected, what one person might accept as reasonable another might equally reject.

The test of choice based on ‘rational’ reasons is a little more difficult to apply. Basically, it asks whether a given choice is the product of ‘mental illness’ or whether it is the product of prudent and critically reflective deliberation. A number of objections can be raised here. For example, contrary to popular medical opinion, there is nothing to suggest that a person’s decision to suicide is always the product of mental disease or depression. A patient could without contradiction ‘rationally’ choose to suicide as a means of escaping an intolerable life characterised by suffering intractable and intolerable pain. Alternatively, a depressed and so-called ‘irrational’ person might refuse a particular psychiatric treatment, such as psychotropic drugs, electroconvulsive therapy (ECT), or psychosurgery, out of a very ‘rational’ and well-founded fear of what undesirable effects these treatments might ultimately have.

The test of ability to understand, on the other hand, asks whether the patient is able to comprehend the risks, benefits and alternatives to a proposed medical procedure, as well as the implications of giving consent. Here objections can be raised concerning just how sophisticated a patient’s understanding needs to be. The problem also may arise of patients perceiving a risk as a benefit. Roth et al (1983: 175), for example, cite the case of a 49-year-old woman psychiatric patient who was informed that there was a one in three thousand chance of dying from ECT. When told of this risk she replied, happily: ‘I hope I am the one!’

The fifth and final competency test is that of actual understanding. This test asks how well the patient has actually understood information which has been disclosed. This can be established by asking patients probing questions and inviting them to reiterate the information they have received. On the basis of educated skill and past experience, the health professional is usually able to ascertain the level at which the patient has understood the information received and what data gaps or misunderstandings remain.

A variation of this test is advanced by Grisso and Appelbaum (1998: 31), and includes assessing patients for their abilities to:

Issues raised by this test criteria are much the same as those already considered above in relation to Roth et al’s competency test (Gert et al 1997).

Whatever the patients’ competency to decide and quality of their autonomous choice may be, any duty of respect owed would still ultimately depend on the demands of other competing moral considerations, as already discussed. Thus, what may appear to be a dilemma involving whether to respect a patient’s autonomy may not in fact be a dilemma at all. For example, if an elderly demented patient keeps wandering aimlessly from his bed, and is at risk of falling and fracturing his hip, overriding considerations do exist which would justify interfering with the choice to wander. If, after careful analysis of all available alternatives, the only way to stop this elderly patient from sustaining a fractured hip is to restrain him, it may well be that the use of a comfortable restraining device is the morally compelling option in this case. If, however, the elderly person is not at risk of falling and sustaining a fractured hip, and his wandering is merely an ‘inconvenience’ to staff, the solution might be better found in securing door locks so as to prevent the patient from wandering out onto the street where there is a very real risk of injury — say, of being hit by a car. This solution is already employed in a number of residential care homes which have installed combination locks on all their doors; only those residents who know the combination of the locks on the doors can freely come and go. Either way, entitlements and corresponding duties in the case of ‘rational incompetence’ must ultimately be determined by critical reflection and not, as can happen, by misguided or unfounded assumption.

It should be noted that competency is a key issue not just in aged care or psychiatric nursing, but in any health care context where judgments of competency are critical to deciding: (1) whether a patient can or should decide and/or be permitted to decide for herself or himself, and (2) the point at which another or others will need to or should decide for the patient — that is, become what Buchanan and Brock (1989) term surrogate decision-makers and what others call ‘proxies’ (Chaboyer 2000). The question remains, however, of how these things can be decided in a morally sound and just way. This question becomes even more problematic when it is considered that patients deemed ‘rationally incompetent’ (or at least, cognitively impaired) can still be quite capable of making ‘reasonable’ self-interested choices, and, further, that the choices they make — even if ‘irrational’ — are not always harmful (Williams 2002).

Commenting on the moral standards which should be met when deciding whether to respect or override the expressed preferences of a patient deemed ‘incompetent’, Buchanan and Brock (1989) argue that it is important to be clear about what statements of competence refer to. Like Gert et al (1997), cited earlier, they argue that statements of competence (i.e. in clinical contexts) usually refer to a person’s competence to do something, in this instance, to choose and make decisions; by this view, competence is, therefore, ‘choice and decision-relative’. Given this, determining competence in health care contexts fundamentally involves determining a person’s ability to make particular choices and decisions under particular conditions (Buchanan & Brock 1989: 311–65; see also Mukherjee & Shah 2001).

An important problem particularly in psychiatric contexts is that severe mental illness can significantly affect the capacities needed for competent decision-making (for instance, understanding, reasoning and applying values), and hence the ability generally of severely mentally ill persons to make sound decisions about their own wellbeing — including the need for care and treatment (Buchanan & Brock 1989). For example, as Buchanan and Brock comment (p 318):

It is precisely in situations such as these that attending health care professionals need a reliable framework within which to decide how best to act — notably: (1) whether to respect a patient’s preferences even though the patient is deemed ‘incompetent’, or (2) whether to override patients’ preferences in the interests of protecting or upholding what has been deemed by others to be in the patient’s overall ‘best interests’. Just what such a framework would — or indeed should — look like is, however, a matter of some controversy. Nevertheless, as Buchanan and Brock’s substantive work Deciding for others: the ethics of surrogate decision-making (1989) has shown, it is possible to devise at least a prima-facie working framework to guide professional ethical decision-making in this sensitive, complex and problematic area. Specifically, Buchanan and Brock (1989: 84–6) suggest that the whole issue hinges on:

In regard to setting and applying accurately standards of competency to choose and decide, Buchanan and Brock suggest that, among other things, ethical professional decision-making in this problematic area should be guided by the following considerations (1989: 85):

In other words, the extent to which an attending health care professional is bound morally to respect the choices of a person deemed ‘rationally incompetent’ depends primarily on the severity of the risks involved to the patient if her or his choices are permitted. The higher and more severe the risks involved, the higher and more rigorous should be the standards for determining the patient’s decision-making capacity, and the more certain attending health care professionals should be that the patient has met these standards. This framework is expressed diagrammatically in Figure 6.1.

For example, if a patient with severe mental illness chooses to refuse hospitalisation, the extent to which an attending health professional is obliged morally to respect this choice will depend on how severe the risks to the patient are of not being hospitalised — for instance, whether a failure to hospitalise the patient will result in her or him suiciding, or will result only in her or him being left in a state of moderate, although not life-threatening, depression. In the case of suicide risk, the grounds for not honouring a patient’s choices do seem at least prima facie stronger than possible grounds for overriding the choices of a patient who is only moderately depressed. (Whether or not the risk of suicide does provide strong grounds for overriding a patient’s choices to refuse hospitalisation and treatment is another question, however, and one which is considered separately in Chapter 11 of this book.)

While Buchanan and Brock’s (1989) ‘sliding scale’ framework is useful, it is not free of difficulties. For instance, there remains the problem of how to determine what is a harm, what is a low/minimal and high/maximal risk of harm, and who properly should decide these things — the answers to which involve complex value judgments. Consider, for example, the following case (personal communication).

An involuntary psychiatric patient refuses to take the psychotropic medication he has been prescribed. In defence of his refusal, the patient argues ‘reasonably’ that the adverse side effects of the drugs he is being expected to take are intolerable, and that he would prefer the pain of his mental illness to the intolerable side effects of the drugs that have been prescribed to treat his mental illness. Staff on the ward in which he is an involuntary patient are divided about what they should do. The more experienced staff in this case insist that the patient should be given his medication forcibly by intramuscular injection. They argue in defence of this decision that the patient’s condition is deteriorating rapidly, and that if he does not receive the medication prescribed he will ‘spiral down into a psychiatric crisis’ (in other words a total exacerbation of his condition), which would be even more intolerable and harmful than the unpleasant side effects he has been experiencing as a result of taking the psychotropic drugs in question. They make the additional value judgment that it would be ‘better’ for the patient if his psychiatric condition was prevented from deteriorating, and that their decision to administer his prescribed medication forcibly against his will is justified on these grounds.

The less experienced staff on the ward disagree with this reasoning, however, and argue that, even though the patient’s psychiatric condition is deteriorating, and this is a preventable harm, the patient is nevertheless able to make an informed choice about this and therefore his wishes should be respected. In defence of their position, they argue that the patient’s complaints are justified — the adverse side effects of his psychotropic drugs have indeed been ‘awful’, and are commonly experienced by other patients as well; and that he has experienced a decline in his psychiatric condition before, and hence knows what to expect. Further, they argue, if he is given the medication against his will, an even greater harm will follow: specifically, he will trust the nursing staff even less than he does already, and will be even less willing to comply with his oral medication prescription than he is now.

In this case, the more experienced staff outnumbered the less experienced staff, and the patient was held down and forcibly given an intramuscular injection of the medication he had refused. Later, after recovering from this incident, the patient was, as predicted by the less experienced nursing staff, grossly mistrustful of the nursing staff on the ward, and even less willing to comply with his oral medication prescription. His requests for different and less drugs, and more counselling, went unheeded.

This case scenario demonstrates the difficulties that can be encountered when accepting/rejecting a patient’s ability to choose and decide care and treatment options, and deciding when and how to override a patient’s preferences. Not only is there the problem of how to determine accurately what a harm is and how a given harm should be weighted morally when evaluating whether a patient’s choices should be respected or overridden; there is the additional problem that attending health care professionals may disagree radically among themselves about how these things should be determined — to a point that may even cause rather than prevent harm to the patient, as happened in this case. What else then should health care professionals do?

One response is to insist on the development of reliable (research-based) criteria for deciding these sorts of problematic issues. The need to do this becomes even more acute when the problem of determining and weighting harms is considered in relation to the broader demand to achieve a balance between protecting and promoting the patient’s wellbeing, protecting and promoting the patient’s autonomy, and protecting others who could be harmed if a mentally ill person is left free to exercise harm-causing choices (as happened in the Tarasoff case, to be considered later in this chapter).

Just what these criteria should be, however, and how they should be applied, is an extremely complex matter, and one that requires much greater attention than it is possible to give here. Nevertheless, Buchanan and Brock (1989) provide an important starting point by identifying the following three factors which should be (and are already being) taken into consideration when deciding whether to override a mentally ill person’s choices, namely (1) whether the person is a danger to herself or himself, (2) whether the person is in need of care and treatment, and (3) whether the person is a danger to others. In regard to the consideration of being a danger to self, Buchanan and Brock (1989: 317–31) correctly argue that what is needed are stringent criteria of what constitutes a danger to self; in the case of the need for care and treatment, that what is needed are stringent criteria for ascertaining deterioration and distress; and in the case of harm to others, that what is needed are stringent criteria of what constitutes a danger to others. And while applying the criteria developed may inevitably result in a health care professional assuming the essentially paternalistic role of being a surrogate decision-maker for a given patient, this need not be problematic provided the model of surrogate decision-making used is patient centred — that is, committed to upholding the patient’s interests and concerns insofar as these can be ascertained (something which was not done in the case given above).

A patient-centred model of surrogate decision-making, in this instance, would have as its rationale preventing harm to patients, and would embrace an ethical framework which is structured ‘for deciding for patients for their benefit’ (Buchanan & Brock 1989: 327, 331). This is in contrast with a non-patient or ‘other’-centred decision-making model, which would have as its rationale preventing harm to others, and which embraces an ethical framework ‘for deciding about others for others’ benefits’ (pp 327, 331). It should be noted, however, that these two models are not necessarily mutually exclusive and indeed could, in some instances, be mutually supporting (a man contemplating a violent suicide involving others is not only a danger to himself but to the innocent others he plans to ‘take with him’). Just which model or models are appropriate, and under what circumstances they should be used, will, however, depend ultimately on the people involved (and the relationships between them), the moral interests at stake, the context in which these moral interests are at stake, the resources available (human and otherwise) to protect and promote the moral interests that are at risk of being harmed, and, finally, the accurate prediction of possibilities and probabilities in regard to the achievement of desirable and acceptable moral outcomes. This, in turn, will depend on the competence, experience, wisdom and moral integrity of the decision-makers, and the degree of commitment they have to: (1) ensuring the realisation of morally just outcomes, and (2) protecting and promoting the wellbeing and moral interests of those made vulnerable not just by their mental illnesses, but by the inability of their caregivers to respond to the manifestation of their illnesses in morally sensitive, humane, therapeutically effective and culturally appropriate ways.

The word paternalism comes from the Latin pater meaning ‘father’, and literally means ‘in the manner of a father, especially in usurping individual responsibility and the liberty of choice’ ( Collins Australian Dictionary 2005). In the bioethics literature, paternalism has been defined in a variety of ways. Literature published in the early 1970s, for example, defined paternalism (construed as a principle viz the paternalistic principle [Beauchamp 1980: 98]) as:

Subsequently, paternalism was defined more specifically as:

A further modification in definition resulted in the suggestion that for an act to be paternalistic:

A more recent definition of paternalism holds it to be:

Early literature on the subject distinguished between two types of paternalism: (1) harm paternalism, and (2) benefit paternalism (Beauchamp 1978a; Beauchamp & Childress 1994). Harm paternalism (underpinned by the principle of non-maleficence) was thought to be justified where it had as its objective protecting individuals from self-inflicted harm. In contrast, benefit paternalism (underpinned by the principle of beneficence) was thought to be justified where it had as its objective securing a good or a beneficence that an individual would not otherwise get — for example, because their liberty is limited. These two forms of paternalism were, in turn, categorised still further, with the following distinctions being made: (1) strong paternalism and (2) weak paternalism, considered below.

In the case of strong paternalism, it was thought to be ‘proper to protect or benefit a person by liberty-limiting measures even when his [or her] contrary choices are informed and voluntary (Beauchamp 1978a: 1197). An example of ‘strong paternalism’ would be where a consultant physician refuses to release a competent although seriously ill patient from hospital even though the patient has requested discharge and knows the potentially fatal consequences of his/her request.

Strong paternalism is in contradistinction to weak paternalism where interference with an individual’s conduct is only justified in cases where that person’s conduct is ‘substantially nonvoluntary or when temporary intervention is necessary to establish whether it is voluntary or not’ (Feinberg 1971: 113, 116). In short, where a person’s autonomy has been compromised in some way (e.g. as a result of pain, drug ingestion, psychogenic distress, physical trauma to the head that interferes with memory, and the like), it is acceptable to paternalistically override a person’s choices or restrain their liberty of conduct. This form of paternalism has been widely accepted in law, medicine and moral philosophy (Beauchamp 2004). An example of ‘weak paternalism’ would be where an attending health care professional attends the scene of a motor vehicle accident and picks up an injured, partially coherent victim and takes him/her to hospital even though the victim has refused an ambulance (Beauchamp 2004: 1985).

As a point of clarification, it should be noted that harm paternalism is thought to be easier to justify and uphold than benefit paternalism. One reason for this is that it was (and is) generally thought, controversially, that we have a greater duty to avoid harm than to promote good — which may not always be within our capacity in given contexts and thus not something for which we could be held morally responsible for not doing. If it was our duty to do or promote good — even where we lacked the resources to do so — this would risk us being condemned as ‘unethical’ for not doing something that we could not do anyway, which would be untenable.

However defined or conceptualised, it should be noted that paternalism remains morally controversial since it always entails the choices or actions of one person being overridden by another without consent. Even if a person’s stated preferences do not originate from a substantially autonomous and authentic choice, ‘overriding his or her preference can still be paternalistic’ (Beauchamp 2004: 1985). This is because, even in the case of ‘diminished autonomy’, persons (e.g. young children, the intellectually disabled and the mentally ill) can still be capable of exercising self-interested choices. It is against this backdrop then that a key question arises, namely: Is paternalism ever justified? and if so, under what conditions?

The literature reveals at least three possible answers to the question of whether paternalism is justified:

These three possible answers are discussed below.

Applying the ‘paternalistic principle’ in health care contexts is not clear-cut and indeed raises a number of important questions, such as: How are we to justify overriding another’s choices? What constitutes beneficial and harmful outcomes for the patient? What constitutes a patient’s ‘best interests’? How are we to measure the quality of another’s autonomy and autonomous choices? Do people have the right to refuse life-saving/enhancing treatment? What if treatments are ‘harmful’?

The abuses of paternalistic decision-making and the rise of individualism and ‘patients’ rights’ in the 1970s and 1980s saw a backlash against paternalism in health care. The past three decades have, however, seen a tempering of this rejection (see also Gert et al 1997; Beauchamp & Childress 2001). As Beauchamp concludes (2004: 1989):

One author has argued controversially that medical paternalism in health care contexts (which he states is often practised ‘covertly’) is not only here to stay, but is ‘essential’ to ethical practice and the promotion of patient autonomy; he writes:

In light of what has been discussed thus far, there is considerable scope to suggest that nurses have much to contribute to the informed consent/decision-making debate. Further, it is clear that the nursing profession needs to pay much greater attention to the doctrine of informed consent and its moral implications for nurses — not least the duties it imposes on nurses to obtain patients’ informed consent to nursing care and procedures, and the issues it raises concerning ‘nursing paternalism’. It is perhaps important to emphasise that, although the doctrine of informed consent has traditionally been discussed primarily in regard to medical treatment and care, the underlying moral values, moral principles and moral requirements of this doctrine apply equally to other kinds of health care practices and procedures, including nursing care and procedures. This is because nurses are no less exempt than are any other health care professionals from the moral standards governing consent procedures, including the demands to:

Likewise the issue of paternalism. Although paternalism has primarily been discussed in regard to the profession of medicine (medical paternalism), the issues raised apply just as well to nursing (nursing paternalism). These issues both stand as fertile ground for further debate, research and scholarship.

As briefly mentioned in the opening paragraphs of this section, there has been a significant shift in the way in which the duty of confidentiality is regarded and practised in health care contexts. Historically, the principle of confidentiality was interpreted as an absolute principle. In application it was (and still is in some contexts, e.g. the priest confessional) taken as demanding that information gained in a professional–client relationship must be kept secret, even when its disclosure might serve a greater public good. An example of the extent to which confidentiality was once regarded by professionals (especially doctors) as being absolute can be found in a 1904 case in which a physician refused to warn a prospective victim that her fiancé was a syphilitic, thereby risking both her and her offspring being exposed to the disease (Bok 1980). Commenting on the case, the physician wrote (p 147):

In another case, reported in the British Medical Journal (BMJ) in 1906, the duty of the doctor to maintain absolute confidentiality was again emphasised. The case involved a man who suffered from asthma and who sometimes became distressed and had even collapsed with his condition — although never while at work. Employed as the sole operator of a railway signal box, and fearing he would lose his job if his employer knew of his medical condition, the man refused to disclose his condition to his employer. Of this case, the editor of the BMJ commented:

Over the past three decades, however, both real and hypothetical cases have exposed the inappropriateness and moral unacceptability of holding confidentiality as being an absolute principle (i.e. cannot be breached under any circumstances).

It is now widely recognised that in cases where innocent victims stand to be significantly harmed by a failure to disclose, the demand to breach confidentiality becomes morally compelling. This was the view taken in the noted US legal case Tarasoff v Regents of the University of California (1974). The case involved a university student, Prosenjit Poddar, who had met and became infatuated with a young woman, Tatiana Tarasoff. Unfortunately, Tarasoff did not share Poddar’s feelings, and told him so. Consequently, Poddar became very depressed and sought psychiatric help on a voluntary outpatient basis at the Cowell Memorial Hospital at the university. During a consultation with his psychologist, Dr Lawrence Moore, Poddar revealed that he seriously intended to kill Tarasoff. After receiving this information the psychologist wrote to the campus police and informed them that Poddar was ‘at this point a danger to the welfare of other people and himself’, also pointing out that Poddar had been threatening to kill an unnamed girl who he felt had ‘betrayed him’ and had ‘violated his honour’ (Daley 1983: 243). The psychologist then went on to ask the police for assistance in detaining Poddar for psychiatric assessment. Daley writes that the campus police detained Poddar ‘but released him when he appeared rational and promised to stay away from Tarasoff’ (p 235).

Following this, Poddar’s psychologist was directed by a superior to take no further action and to destroy his client’s records (a practice which is sometimes followed by psychologists, psychotherapists and psychiatrists in order to ensure confidentiality). Two months later, as he had threatened to his psychologist, Poddar carried out his intention and killed Tarasoff with a butcher’s knife.

Daley (1983) notes that neither the girl nor her parents were warned of Poddar’s threat. It seems that none of the psychotherapists involved considered it part of their professional morality to warn the victim. Even the California Supreme Court acknowledged recognition of the general rule that ‘there is ordinarily no duty to control the conduct of another or to warn those endangered by such conduct’ (p 235). However, the Supreme Court also recognised certain exceptions to the general rule, and its final decision in the Tarasoff case imposed a new duty to warn upon doctors and psychiatrists under its jurisdiction. The psychiatric profession ‘reacted with alarm’ to the California Supreme Court’s ruling, claiming that it would ‘cripple the use of psychotherapy by destroying the confidentiality vital to the psychiatrist–patient relationship’ (p 234).

In Australia, the duty to warn an intended victim at risk of harm by another became the subject of media commentary and controversy after a Sydney woman, who contracted HIV from her husband, ‘successfully sued the medical practice where the couple had received premarriage testing for sexually transmitted diseases’ (Lamont 2003: 1). The woman (who was in her late twenties) sued the practice for failing to tell her of her husband’s HIV-positive status. Damages of $727000 were awarded to the woman on the grounds that ‘the doctors had not adequately counselled either partner about their results’ ( The Age 2003: 14). The woman only learned about her husband’s HIV-positive status 15 months after they had both been tested when she found a laboratory report showing that her husband was HIV-positive; previously, the husband had shown her a falsified report declaring him to be HIV-negative. Although the court upheld the principle of doctor–patient confidentiality and affirmed that ‘doctors cannot be sued for damages by maintaining the confidential relationship’, it also affirmed that doctors ‘must safeguard patients through proper counselling protocols and, if necessary, notify the Director of General Health, who has the power to breach confidentiality and directly warn someone they are at risk of infection’ (Lamont 2003: 1). An editorial appearing in The Age, concluded (2003: 14):

The Tarasoff case and others like it (such as the Sydney case, cited above) raise interesting and thought-provoking questions about the nature and force of the principle of confidentiality and the extent to which health professionals are obliged morally to uphold it.

In general the demand to keep secret information disclosed in a professional–client relationship is thought to derive from the broader moral principles of autonomy, non-maleficence, justice and the obligation to keep one’s promises. In the case of autonomy, it is held that individuals are entitled to choose who should have access to information about themselves, as well as what information should be disclosed, if any. Non-maleficence, on the other hand, demands that people are entitled to be protected from the harms that might flow from disclosure (which, as we know, can be both considerable and intolerable). And justice demands that a person, about whom ‘private’ information is known, deserves to be treated fairly. Promise-keeping, simply put, demands that ‘added respect is due for that which one has promised to keep secret’ (Bok 1980: 149), although it is generally recognised that a promise to do morally evil things is either not binding at all or ‘deficient in its binding power’ (Freedman 1978: 12).

In health care contexts, the supremacy of the principle of confidentiality is thought to be particularly justified on grounds that it is crucial to preserving the fiduciary (trust) nature of the health professional–patient relationship (Beauchamp & Childress 2001; Gert et al 1997). If patients/clients can trust their attending health professionals to keep secret certain information disclosed in the professional relationship, it is thought that patients/clients will be more likely to reveal information crucial for making a correct assessment/diagnosis, and thus a correct prescription of care and treatment.

Understandably, if it were common practice to breach confidentiality, patients/clients would probably lose their trust and confidence in their attending health care professionals, and would probably refrain from divulging critical information to them. Worse, they might not seek professional help at all — something which might have the undesirable consequence of individuals, groups and indeed the community at large, suffering a health status inferior to that which might otherwise be enjoyed.

The question remains, however, of whether the principle of confidentiality really is as binding as professionals seem to think it is. Where does it come from? And, as Bok (1980: 154) correctly asks: ‘Was it ever meant to stretch so far as to require lying?’; ‘Why is it so binding that it can protect those who have no right to impose their incompetence, their disease, their malevolence on ignorant and innocent victims?’

In answering these questions, it is important to understand the nature of the principle of confidentiality and why, up until recently, it has been problematic in health professional practice. If we examine its parent principles, that is, the broader moral principles from which it has been derived, we can soon see why an absolutist view of confidentiality is questionable and why the shift towards accepting it as being a prima-facie duty is more compelling.

On close analysis it can be seen that, at best, the principle of confidentiality is, and can only ever be, a prima-facie principle. Confidentiality has a special link to a person’s right to privacy, which may be loosely defined as the right to ‘have control over information about ourselves’ or ‘control over who can sense us’ (Parker 1974; McCloskey 1980; Thomson 1975). This in turn is connected with the principle of autonomy, which demands that people should be respected as autonomous choosers, and have the right to act on their choices provided these do not seriously impinge on the moral interests of others. Given this, it seems reasonable to hold that, where the maintenance of confidentiality results in the moral interests of others being violated, the principle can and must be overridden. This conclusion is also partially supported by the principles of non-maleficence and justice. Thus, in instances where keeping a confidence or a secret has the unhappy consequence of causing or failing to prevent an otherwise avoidable harm, and/or indeed results in an unequal distribution of harms over benefits, there is a very strong case supporting disclosure of the information being kept secret.

When subjected to the scrutiny of broader moral principles, it can be seen, first, that there are serious limits to the duty of secrecy and of maintaining confidentiality. Second, it is clear that, while in some instances the norm of confidentiality might justifiably extend to include lying, this does not hold unconditionally in all cases. (Given a consequentialist analysis, lying can only ever be justified on the grounds that it is necessary to prevent an otherwise avoidable harm from occurring, and where there is no other alternative action which can be taken to prevent the foreseen harm in question.) Third, it can be seen, given the competing demands of the moral principles of non-maleficence and justice, that the principle of confidentiality can never be used morally to protect those who would impose their incompetence, their diseases and their malevolence on to innocent and uninformed victims.

Unfortunately, the moral principle of confidentiality has sometimes been (ab)used to prevent the disclosure of unscrupulous practices. A poignant example of this can be found in the Chelmsford case referred to in Chapter 5. Of particular relevance to this discussion is the point that, after the 60 Minutes program in 1977, when some advice was sought by medical authorities on how to deal with the Chelmsford case, the principle of confidentiality was used to impose a duty of silence on the matter, or at least to delay its exposure. When, for example, an eminent professor of psychiatry at Cambridge University was approached about the matter, he advised:

This appeal to the principle of confidentiality is questionable, and stands as an example of how conventional ethical principles of conduct can be (ab)used to maintain and reinforce the status quo rather than to challenge it. Further, when more parochial interpretations and applications of the principle of confidentiality are considered, what emerges is not a respect for ethical conduct, but rather what Bok (1980) describes as ‘primeval tribal emotions: the loyalty to self, kin, clansmen, guild members as against … the unrelated, the outsiders, the barbarians’ (p 149). Bok (p 149) concludes by warning that the principle of confidentiality can sometimes serve little more than the drive for ‘self-preservation’ and ‘collective survival in an hostile environment’. The Chelmsford case is an example of this.

It is not being argued here that the principle of confidentiality ought not to be respected. On the contrary: confidentiality is an important moral requirement of any health care professional–patient/client relationship, and one that is crucial to ensuring the protection of a patient’s/client’s wellbeing and moral interests. Indiscriminate breaches of confidentiality can have morally undesirable and catastrophic consequences for patients/clients. For example, careless breaches of confidentiality concerning persons who are HIV-positive can result — and have resulted — in people being dismissed from their jobs, being evicted from their rented accommodation, and being subjected generally to a wide range of negative discrimination and abuse. Similarly, careless breaches of confidentiality concerning a person’s mental health status (including mild depression and grieving states) can also result — and have resulted — in harmful consequences, including persons losing their jobs or having their career prospects hampered (see also Johnstone 2001). It is crucial, therefore, that every effort is made to ensure that information disclosed in the professional–client relationship is kept secret. This is not to say, however, that there is not a need for the principle of confidentiality to be interpreted better and applied more justly than it has been in the past. Points of clarification which need to be particularly addressed are summarised as follows:

In light of the above, it can be seen that patients (and others) might not always be entitled to have certain information about themselves kept secret; and that disclosure, in some instances, might even be an overriding moral duty, particularly in cases where non-disclosure entails the probability of innocent others suffering unnecessary and avoidable harms (e.g. children as in the case of child abuse). As indicated earlier in this discussion, this second demand is also reflected in legal law, which requires health professionals to report certain notifiable diseases, suspected cases of child abuse (to be examined in depth in Chapter 8 of this work), and other activities ‘which [are] potentially or actually dangerous to the health of others’ (Wallace 1991: 303).

Whatever the situation at hand, nurses’ decisions to keep secret or to disclose certain information gained in a professional–client or other type of relationship (e.g. an employee–employer relationship) must always be based firmly on sound moral justifications and moral decision-making procedures. Nurses also need to remember that arbitrary disclosure is just as morally capricious as arbitrary non-disclosure, and may have just as many devastating consequences. As in any morally troubling situation, dilemmas posed by a controversial application of the principle of confidentiality must be resolved in a way which ensures the realisation of morally just outcomes.

The word dignity comes from the Latin dignitas, meaning ‘merit’, and dignus, meaning ‘worthy’. Needless to say, there are as many definitions of ‘dignity’ as there are dictionaries. Collins Australian Dictionary, for example, defines dignity as:

According to the Oxford English Dictionary, dignity is:

Webster’s Dictionary says dignity is:

Interestingly, the unabridged international edition of Webster’s Dictionary also gives consideration of the word ‘decent’ (i.e. of the mind and character) as a definition of dignity. It is perhaps worth noting here that the term ‘decent’ comes from the Latin decens, meaning ‘suitable’, and from decere, meaning ‘to be fitting’.

The question of dignity has also been a topic of significant philosophical debate. For example, in 1651 the English philosopher Thomas Hobbes defined it as (1968: 52):

Later philosophers, however, rejected this ‘social worth’ view and sought to define dignity in more sophisticated moral terms. The German philosopher Immanuel Kant, for instance, defines dignity in quite different terms as ‘an intrinsic, unconditioned, incomparable worth or worthiness’ (1972: 35). Rejecting the ‘market value’ or ‘social worth’ interpretations of dignity, he goes on to assert that:

More recent definitions and interpretations have tended to capture the essence of Kant’s views. One philosopher, for example, argues that dignity is akin to ‘justified happiness’ (a happiness which is ‘interpenetrated with a sense of meaning, reason, and worth’) and the attainment of ‘just goals’; that is, morally valuable ends (Swenson 1981). The behaviourist B F Skinner (1973: 48–62) sees dignity and what he calls the ‘struggle for dignity’ as having many features in common with freedom and the ‘struggle for freedom’.

Some of the most revealing and instructive definitions of dignity, however, come from a group of first-year undergraduate nursing students from the former Phillip Institute of Technology (now RMIT University). Comments were sought from the students after their clinical placement at a residential care home for the elderly. The results are summarised as follows.

Dying with dignity, in turn, was described by the students in the following terms:

In considering all these definitions, it soon becomes apparent that there may be as many definitions of ‘dignity’, and ‘dying with dignity’, as there are people trying to define it. The lesson to be learned from this is that nurses — and indeed health care professionals generally — must never take the notion of dignity (and its usage) for granted. They must also be cautious in treating these terms as if they had clear-cut, commonsense interpretations. What one person might consider ‘dignity’, another person might equally reject — and this has important implications for nursing care delivery in particular, and health care management generally.

How, then, should dignity be defined? and What is meant by the right to dignity?

Despite the variety of definitions and interpretations of the notion ‘dignity’, there are a number of common elements which may be encapsulated in a working definition of dignity. In summary, these include:

Taking these elements into account, the right to dignity (encompassing the rights to uphold one’s own dignity and to be treated with dignity by others) may, in turn, be taken to mean: a special interest that persons have in being treated as entities with intrinsic moral worth, whose autonomy and capacity for exercising self-determining choices ought to be respected, and who ought to be supported and facilitated in their attempts to maintain self-respect and self-esteem.

Before concluding this discussion on the right to dignity, some comment on the notion of ‘dignity violations’ and its possible implications for the health and social wellbeing of people is warranted.

According to the late Jonathan Mann, Professor of Health and Human Rights at the Harvard School of Public Health, there exists a critical relationship between dignity — or rather ‘dignity violations’ — and the health and social wellbeing of people (Mann 1997: 11). Although conceding that a satisfactory definition of dignity is both complex and elusive, Mann is adamant that we can nonetheless know when our ‘dignity is violated or impugned’. Moreover, by undertaking an exploration of dignity (what it means and what forms violations of it might take) we may uncover new and important understandings of human suffering and progress the human effort that is needed to redress this suffering as a health and human rights issue (Mann 1997: 11). Mann’s thoughts on this are worth quoting in full; he states:

For Mann, dignity is a fundamental precursor of the realisation of human rights that, in turn, is a linchpin to the realisation of the goals of health (Mann 1997; Mann et al 1994, 1999). Realising this connection, meanwhile, serves to also reveal ‘the rights-related responsibilities of physicians and other health care workers’ to make allies of public health and human rights and to push for a ‘new’ ethics of the public’s health (Mann 1997; Mann et al 1994, 1999).

Whatever nurses or allied health workers take dignity and its various applications to mean, it is important that they do not unfairly impose their interpretations on their patients. It is morally imperative that patients’ preferences (which might include them abdicating their autonomy to a surrogate decision-maker) are respected, even if others do not agree with these. This means that, where possible, and in a manner that is culturally appropriate, patients are morally entitled to participate in decision-making concerning their care, and are morally entitled to give a fully informed consent to the use and withdrawal of recommended medical or other therapies. If patients are not able to participate in decision-making concerning their care and treatment, every effort must be made to establish what their considered preferences might be. Either way, in the final analysis, what is to count as dignity — whatever the health care situation and context — must be decided from the patients’ (or their advocates’) point of view, not that of the health professionals.

Given this, nurses should not be asking ‘What is dignity?’, but ‘What is dignity for this or that person?’ The challenge to nursing is not just to allow patients the right to be treated with dignity or the maintenance of dignity, but actually to find out what the patient considers as being dignity, and ensuring that this is permitted and upheld on terms of what the patient wants, and not on what the nurse thinks the patient wants.