The right to equal access to health care

Access to health care refers to ‘whether people who are – or should be – entitled to health care services receive them’ ( Emanuel 2000 : 8; see also Lane et al 2017 ; Nunes et al 2017 ; Rumbold 2015 ). 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 the people 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:

• 1
  

  the demand for health care has outstripped supply

  
  
• 2
  

  this is fundamentally because health care resources are limited

  
  
• 3
  

  different people have different health needs, and different views on how existing resources should be used to meet these needs

  
  
• 4
  

  it is true that existing health care resources can be used in alternative ways

  
  
• 5
  

  nevertheless, health care resources are limited, so it is not possible to satisfy everybody’s needs and wants ( Beauchamp & Childress 2013 ; Dyck 2005 ).

The ultimate conclusion drawn from these premises 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:

• 1
  

  the conditions for which scarce resources should be made available

  
  
• 2
  

  the priority with which given conditions should be treated.

It remains an open question, however, whether the premises of the ‘scarce resources, but unlimited wants’ argument are to be accepted and, further, whether its apparent ‘inevitable’ conclusions must also be accepted. Given the politicisation of the health care resources debate, it is far from clear that the ‘scarce resources’ argument must be accepted – at least not in its conventional form. Further, it is also open to 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 seems to demand. Human life is not something that can be reduced, like an object, to mere economic worth. Attempts to do so 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. This is not to say that there is no place for the economics of health care to be regarded as an important ethical issue requiring attention. For example, Baily (2011) , a US health economist, has persuasively argued that health care economics is – and should be seen as – an ethical issue in its own right and it is time that it was placed firmly back on the public agenda.

It is important to recognise meanwhile that the issue of resource allocation in health care goes far beyond the simple question of merely how to allocate dollars and cents . It involves much broader questions of how ‘equity in health care’ should itself be defined ( Lane et al 2017 ), how to measure quality of life, quality of care, the value and efficacy of health care and medical treatment (defined as ‘outcomes relative to costs’ ( Porter 2010 : 2477)), and how to calculate cost-effectiveness as well as complex socio-cultural questions pertaining to power, politics and profit ( Callahan 2009 ; Engster 2014 ; Fourie & Rid 2016 ; Kaufman 2015 ; Porter 2010 ; Schneiderman 2011 ; Scott 2014 ; Ter Meulen 2011 ; Welch et al 2011 ). Fundamentally, it also involves questions of how best to promote health , not merely how to access health care services in ‘bricks and mortar’ hospitals and specialist clinics.

The right to have access to appropriate care

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 conventional models of health care delivery (their value and effectiveness), the ability generally of health care services to accommodate people’s personal preferences, health beliefs, health values and health practices, and, of relevance to multicultural societies, the capacity of health care services to uphold agreed standards of cultural competency and cultural safety when caring for people of diverse cultural and language backgrounds. As examples given in Chapter 4 have already shown, failure to provide health care in a culturally appropriate, responsive and informed manner can have harmful consequences (clinically, legally and morally). 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 patients and health service providers alike.

Many other examples can be given here. The complementary therapy movement, for instance, has posed all sorts of ethical issues for health service providers, particularly in instances where patients prefer to use untested vitamin or herbal remedies, 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 becoming better researched and more widely accepted by health professionals. Thus, today, it is not uncommon for patients to receive a combination of orthodox and unorthodox treatments.

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, to choose an alternative health therapy, to be surrounded by family and friends and for them to have unrestricted visiting rights, and to decline to be ‘ordered’ to do anything they do not wish to do. As the Australian Consumers’ Association (1988 : 16) stated three decades ago, patients do not need a doctor’s or nurse’s ‘permission’ (to be distinguished here from advice ) for anything.

The right to quality care

A right to appropriate quality care is the third sense in which the right to health care can be claimed ( Nunes et al 2017 ).

Quality in health care (to be distinguished from safety in health care ) has been defined as ‘the degree to which health services for individuals and populations increase the likelihood of desired health outcomes consistent with current professional knowledge’ ( Runciman et al 2009 : 22). In keeping with the Australian Commission on Safety and Quality in Health Care framework ( ACSQHC 2010 ), high-quality care is always:

• 1.
  

  consumer centred – which means: providing care that is easy for patients to get when they need it; making sure that health care staff respect and respond to patient choices, needs and values; forming partnerships between patients, their family, carers and health care providers

  
  
• 2.
  

  driven by information – which means: using up-to-date knowledge and evidence to guide decisions about care; collecting and analysing data on quality and safety and feeding back information for improvement; taking action to improve patients’ experiences.

( ACSQHC 2010 : 2)

In light of the above provisions, it can be seen that the ‘quality care’ sense of the right to health care imposes a range of obligations and responsibilities on health care providers including having the ‘right attitude’ as well as the ‘right knowledge’ and ‘right skills’ – in short being competent in their practice.

The right to safe care

Safety, which is often included as a component of quality, is different from quality in that it has a different emphasis, notably ‘the reduction of risk of unnecessary harm associated with healthcare to an acceptable minimum’ ( Runciman et al 2009 : 21). In keeping with the Australian safety and quality framework for health care ( ACSQHC 2010 : 2), safe care is also consumer centred and driven by information (as outlined above). In addition, safe health care is organised for safety, by which is meant that safety is made a ‘ central feature of how healthcare facilities run, how staff work and how funding is organised’ [emphasis added] ( ACSQHC 2010 : 2).

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). 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 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’ ( ICN 2012b : 1). In keeping with the principles of a ‘system approach’ to human error management, the ICN explains:

Early identification of risk is key to preventing patient injuries, and depends on maintaining a culture of trust, honesty, integrity, and open communication among patients and providers in the health care system. ICN strongly supports a system-wide approach, based on a philosophy of transparency and reporting – not on blaming and shaming the individual care provider – and incorporating measures that address human and system factors in adverse events. ( ICN 2012b : 1)

(The issues of reporting patient safety concerns will be discussed in Chapters 11 and 12 .)

Challenges posed by the right to health and health care

Nurses, individually and collectively, have a moral responsibility to act in ways that promote and protect 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’:

To ask what justice demands of us, to ask what we owe one another, is to ask what kind of community we aspire to be in our relations to one another, particularly when some among us are ill and otherwise in need. What we do about health care reflects what kind of community we are, and what we think ought to be done about health care reflects what kind of community we think we ought to be. ( Dyck 2005 : 307–8)

The question of health care justice, and in particular the problem of health inequities, will be considered in more detail in the final chapter of this book.

What is informed consent?

Informed consent is defined by the Australian Commission on Safety and Quality in Health Care (ACSQHC) as a ‘process of communication between a patient and a clinician about options for treatment, care processes or potential outcomes’ ( ACSQHC 2017 : 289). This communication process is aimed at (and is expected to result in) obtaining ‘the patient’s authorisation or agreement to undergo a specific intervention or participate in planned care’ ( ACQSHC 2017 : 289). The key purpose of the communication is to ensure that the patient ‘has an understanding of the care they will receive, all the available options and the expected outcomes, including success rates and side effects for each option’ ( ACSQHC 2017 : 289).

Positioned as a national safety and quality health service accreditation standard, all public health services are expected: to implement processes to enable partnership with patients in decisions about planning and delivering their care including informed consent to treatment, to have in place mechanisms to monitor and improve documentation of informed consent, and to have in place mechanisms to align the information provided to patients with their capacity to understand.

It should perhaps be clarified that 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 2013 ; Staunton & Chiarella 2017 ). In distinguishing the differences between a legal and a moral approach to informed consent, Faden and Beauchamp (1986 : 4) explain that, from the perspective of legal law, the approach taken 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, from the perspective of moral philosophy, the approach taken 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’ ( Faden & Beauchamp 1986 : 4). The overall purpose of informed consent is, however, a moral one in that it seeks to protect patients and their loved ones from preventable harm and to improve the safety and quality of health service provision.

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. 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, although 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, or is disclosed in a manner that seeks to manipulate choice), 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’ ( Beauchamp & Childress 1983 : 67; see also Capron 1974 ; Gert et al 1997 ).

There is no question that consent practices have improved considerably over the past four decades ( Wolf et al 2018 ). 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 ( Kerridge et al 2013 ). Even so, some unresolved issues remain. For example, when seeking consent to treatment, health professionals must also inform patients of their entitlement to refuse a recommended medical or nursing procedure, and the opportunity to refuse must always be presented without prejudice to them. This entitlement holds even when health care providers do not agree with refusal or when refusal may cause them to experience distress.

A lack of qualified health interpreters in health care contexts can also compromise informed consent processes. For example, a 2005 Australian study ( Johnstone & Kanitsaki 2007a ) has suggested that, in some situations, because of not having ready 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 revealed that a testing rather than a therapeutic communication (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 2007a : 101). In a US case, a patient who was ‘continuously crying’ was deemed to be ‘non-verbal’ on account of going all day without an interpreter enabling her to voice what was wrong (she was in pain) ( Taira 2018 ). Progressive commentary and a growing body of published research (too numerous to list here) has underscored ongoing issues concerning the need to improve communication and consent procedures with patients with limited English proficiency (see, for example, Basu G et al 2017 ; Lee et al 2017 ; Taira 2018 ).

The analytic components and elements of an informed consent

The concept of informed consent is comprised of five analytic components: disclosure, comprehension (understanding), voluntariness, competence and consent itself ( Faden & Beauchamp 1986 ). In their classic work on the subject, Faden and Beauchamp (1986 : 54) argue that, for consent to be regarded as informed , it must satisfy a number of criteria, notably:

(1) a patient or subject must agree to an intervention based on an understanding of (usually disclosed) relevant information, (2) consent must not be controlled by influences that would engineer the outcome, and (3) the consent must involve the intentional giving of permission for an intervention.

More recently, Beauchamp and Childress (2013) have argued that, for consent to be informed, the following seven elements must be evident:

• 1.
  

  Threshold elements (preconditions)

  
  
  
  
  • (i)
    

    Competence (to understand and decide)

    
    
  • (ii)
    

    Voluntariness (in deciding)

  
  
  
  
• 2.
  

  Information elements

  
  
  
  
  • (iii)
    

    Disclosure (of material information)

    
    
  • (iv)
    

    Recommendation (of a plan)

    
    
  • (v)
    

    Understanding (of 3 and 4)

  
  
  
  
• 3.
  

  Consent elements

  
  
  
  
  • (vi)
    

    Decision (in favour of plan)

    
    
  • (vii)
    

    Authorization (of the chosen plan).

  
  

( Beauchamp & Childress 2013 : 124)

The plausibility of the analytic components and elements of informed consent as outlined above will be considered further in Chapter 8 .

Informed consent and ethical principlism

As stated above, informed consent is in essence a legal doctrine. Even so, it also rests heavily on ethical principlism (discussed in Chapter 3 ), for both its content and its justification as an action guide. The principles of particular importance here include those of:

• •
  

  autonomy – which demands respect for patients as self-determining choosers, and justifies allowing them the option of accepting risks

  
  
• •
  

  non-maleficence – which demands the protection of patients from battery, assault, trespass, exploitation and other harms that may result from inadequate or inappropriate consent processes (including inadequate, inappropriate or manipulative disclosures of information)

  
  
• •
  

  beneficence – which demands the maximisation of patient wellbeing via consent processes

  
  
• •
  

  justice – which demands fairness and that patients not be unduly or intolerably burdened by consent processes.

It should be noted that, although 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 may be justly overridden or restricted by other moral considerations and principles, such as those already mentioned.

The right not to know

Developments in the field of genomics over the past two decades have rekindled debate on the so-called ‘right to genetic ignorance’ and the right of people not to be burdened with ‘unwanted knowledge’ about their genetic constitution ( Chadwick et al 2014 ). Central to this debate is the question of whether, counterbalancing the right to know , people also have the right not to know – that is, to remain consciously ignorant of their genetic constitutions or other information about themselves or others.

Some argue, unequivocally, that there can be no right to genetic ignorance; quite the reverse: people in fact have a duty to know their genetic constitutions ( Bortolotti & Widdows 2011 ; May & Spellecy 2006 ; Räikkä 1998 ; Rhodes 1998 ; Takala 1999 , 2001 ; Turner 2009 ; Wilson 2005 ). Key reasons for this include: to prevent harm to others (i.e. passing on harmful genetic diseases to offspring), to prevent harm to self (i.e. the early diagnosis of genetic diseases, or predispositions to them, will enable people to obtain timely medical management and treatment), and to protect autonomy (having access to relevant information is essential to self-determination and the exercise of autonomous choice) ( May & Spellecy 2006 ; Räikkä 1998 ; Takala 1999 , 2001 ). Accordingly, informing people of their genetic constitution – even if they do not want to know about it – is justified ( reasonable paternalism argument) ( Wilson 2005 ). Second, there are no grounds for plausibly claiming a right to ‘self-regarding foolishness’, of which a claim to genetic ignorance is seen to be an example ( Takala 1999 ).

Others, however, are more circumspect. Although acknowledging that the right not to know is controversial, they hold that it can nonetheless be justified. First, respect is due to people’s preferences ( self-determination and autonomy argument); by this view there is no duty to know ( Häyry & Takala 2001 ). Second, people have a right to genetic privacy and to be free of trespass (individuals are sovereign and are entitled to protect their private sphere, notwithstanding that this private sphere also includes genetic information about their forebears, which they may have preferred were kept private). Once known it can be difficult to maintain the confidentiality of personal information; as Turner (2009 : 300) notes, ‘it is sometimes impossible to learn something without permitting others to learn that information as well’ and to prevent them from making harmful disclosures of that information. Third, imposing unwanted information on people violates their sovereignty and risks ‘smuggling’ medical paternalism back into practice ( anti-paternalism argument ) ( Häyry & Takala 2001 ; Takala 2001 ). Finally, the predictive power of genetic profiling is overstated; people could be harmed by information about their genetic constitution – particularly if, on the basis of the information received, they take drastic action aimed at preventing a disease that, on the balance of probabilities, may never develop (e.g. undergoing a bilateral mastectomy to avoid the risk of breast cancer, or committing suicide out of a fear of developing Alzheimer’s disease).

Questions concerning the right to know versus the right not to know have relevance to other areas in health care, not just in the domain of genetic profiling. For instance, there are some circumstances in which patients do not always want to receive information that might otherwise be necessary to meet the criteria of providing an informed consent to treatment (e.g. for the treatment for a cancer-related illness) ( Stahl & Tomlinson 2017 ). Moreover, as discussed in Chapter 4 , there are situations (e.g. having a cancer diagnosis disclosed) where a patient might, on the basis of strongly held cultural health beliefs and practices, unequivocally decline the opportunity to receive the ‘unwanted’ information. In these kinds of situations, when patients make an authentic choice not to receive certain information and, on reflection, are not open to changing their minds about receiving the information in question, then to impose this information upon the patients would count as a paternalistic act – which might not be justified (the subject of ‘paternalism’ will be considered below).

In weighing up the right to know and the right not to know, it is important to be mindful that knowledge is not a neutral force: while knowledge can empower people, it can also constrain and restrict them. As Turner (2009 : 308) explains,

Knowing enlarges our set of possibilities but also narrows it. It can reinforce our beliefs or overturn them. It is, in short, a chaotic force, one often beyond our control, that sculpts our very persons as it (a) reduces the world of unlimited options to a restricted set of rational objectives, dividing conduct into the rational and the impermissibility irrational, and (b) changes the way we see ourselves and the world around us. Even when knowledge is not toxic […] it might be a dangerous weapon capable of being turned against us by others.

In light of this, it is understandable that, in some situations, people would rather remain ignorant than be burdened with a knowledge that stands to disrupt their meaning and place in the world at large (recall the example of ‘Mr G’ given in Chapter 4 , and the harmful consequences of the attending doctor imposing information about his cancer-related diagnosis and prognosis in a manner that was against his and his family’s wishes). Where deciding the right not to know stands as a conscious decision and poses no risks to the significant moral interests of others, health professionals ought to respect this preference – although noting that ascertaining this preference may, in reality, be difficult. As Turner (2009 : 351–2) goes on to point out:

Without asking directly, it is impossible to be absolutely certain whether an individual wants, at a given moment, to learn some piece of information. But, asking that question itself conveys information , diminishing to at least some degree the ignorance that individual might have wanted to maintain. [emphasis added]

For example, although well intended, the common practice in Australian hospitals of independently seeking the wishes of non-English speaking patients through the use of an interpreter risks violating their right ‘not to know’. This practice generally entails a doctor or another member of the health care team getting patients aside from their family members and independently questioning them through the use of an interpreter about whether they want to be told the results of diagnostic tests directly (e.g. for ascertaining a cancer diagnosis), or whether they prefer this information be relayed to their family instead. This approach is problematic since it risks ‘letting the cat out of the bag’: by asking the patient the question, the very thing the patient does not want to know is revealed – that is, that he is facing a cancer-related illness.

Informed consent and the sovereignty of the individual

Foundational to the doctrine of informed consent is the view that the individual is sovereign: alias the sovereignty of the individual . This highly individualistic and idealistic 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:

Within this zone of privacy, one is able to exercise his or her liberty and discretion. Within this protected sphere take place disclosure, comprehension, and choice, which express the patient’s right of self-determination … The person is opaque to others and therefore the best judge and guardian of his or her own interests. Although the physician may be the expert on the medical ‘facts’, the patient is the only individual with genuine insight into his [sic] private sphere of ‘values’. Because treatment plans should reflect personal values as well as medical realities, the patient must be the ultimate decision-maker. ( Kuczewski 1996 : 30)

A significant implication of this view is that the patient’s family, friends and / or chosen carers are conceived ‘as comprising competing interests’; they are also seen as having no entitlements whatsoever in regard to any consent to medical treatment processes in which the ‘sovereign individual’ might otherwise engage ( Kuczewski 1996 ). This may help to explain some of the tensions examined previously in Chapter 4 in regard to family members seeking active participation in consent to medical treatment processes for their loved ones and the reluctance by some doctors and nurses to involve these family members in such processes.

Negative attitudes towards family involvement in patient decision-making and consent to treatment are, however, shifting. It is being increasingly recognised that family members and chosen carers have a vital role to play in advocating the safe and high-quality care of their loved ones. By being intimately acquainted with (‘knowing well’) the patient, family members and 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 decisions and the values, beliefs (new and old) and deliberations influencing these decisions. The role of family members and loved ones in consent processes is particularly important given that, in stressful and unfamiliar situations, patients are vulnerable both to information overload and to 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 – all these may contribute to lessening an individual’s capacity to pay attention to and to recall information that has been disclosed.

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 physically at the same level as the patient, being generally respectful, and so on. It such situations, a patient’s family or loved ones can be especially supportive and can play a vital role in restoring the otherwise-diminished autonomy that their sick loved ones might be experiencing.

Paternalism and informed consent

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 2011 : 1210). 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:

the interference with a person’s liberty of action justified by reasons referring exclusively to the welfare, good, happiness, needs, interests or value of the person being coerced. ( Dworkin 1972 : 65)

Subsequently, paternalism was defined more specifically as:

interference with a person’s freedom of action or freedom of information, or the deliberate dissemination of misinformation, where the alleged justification of interfering or misinforming is that it is for the good of the person who is interfered with or misinformed. ( Buchanan 1978 : 372)

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

There must be a violation of a person’s autonomy … There must be a [sic] usurpation of decision-making, either by preventing people from doing what they have decided or by interfering with the way in which they arrive at their decision. ( Dworkin 1988 : 123)

A more recent definition of paternalism holds it to be:

the intentional overriding of one person’s preferences or actions by another person, where the person who overrides justifies this action by appeal to the goal of benefiting or of preventing or mitigating harm to the person whose preferences or actions are overridden. ( Beauchamp & Childress 2013 : 215)

Early literature on the subject distinguished between two types of paternalism: (1) harm paternalism, and (2) benefit paternalism ( Beauchamp 1978 ; 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 (or hard) paternalism and (2) weak (or soft) 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 1978 : 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 justified only 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. 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 & Childress 2013 ). 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?’

Is paternalism justified?

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

• 1
  

  pro-paternalism (always justified)

  
  
• 2
  

  anti-paternalism (never justified)

  
  
• 3
  

  prima-facie paternalism (sometimes justified).

Prima-facie paternalism (sometimes justified)

Proponents of prima-facie paternalism (also known as ambivalent paternalism) hold the view that paternalism is sometimes justified , though severely limited. Any action of coercion against or interference with another’s conduct carries a heavy burden of justification. Paternalism is justified only where:

• 1.
  

  the evils prevented from occurring to the person are greater than the wrongs [if any] caused by the violation of the moral rule

  
  
• 2.
  

  it can be universally justified under relevantly similar circumstances always to treat persons in this way.

( Silber 1989 : 453)

These three positions may be expressed diagrammatically, as shown in Fig. 7.1 .

Three positions on paternalism

Despite the apparent differences between these three positions, there is some agreement between the positions of ‘weak paternalism’ and ‘anti-paternalism’. These are:

• 1.
  

  it is justifiable to interfere in order to protect persons against harm from their own substantially non-autonomous decisions; and

  
  
• 2.
  

  it is unjustifiable to interfere in order to protect persons against harm from their own substantially autonomous decisions.

( Beauchamp 2004 : 1986)

One reason for this closeness in position is that, as some contend, ‘weak paternalism’ is not really paternalism at all since it cannot be substantively distinguished from anti-paternalism. In the ultimate analysis, both rest on the principles of beneficence and non-maleficence, and both reject strong paternalism (which justifies overriding strongly autonomous choices). However, when it is considered that even strong paternalism rests on the principles of beneficence and non-maleficence, the differences between all three positions may, in the end, be overstated.

Applying the ‘paternalistic principle’ in health care

Application of 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?’ and ‘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 four decades have, however, seen a tempering of this rejection ( Beauchamp & Childress 2013 ). As Beauchamp has prophetically noted (2004 : 1989):

Paternalism seems likely to continue to be a viewpoint that will gain or lose adherents as the issues and larger social context shift. We may never again see the concentrated flurry of scholarly interest in this subject that was exhibited from the mid 1970s to the mid 1980s, but paternalism is not likely to be an issue that will soon disappear.

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 also ‘essential’ to ethical practice and the promotion of patient autonomy; he writes:

Although patient autonomy is dominant in current ethical discussions, medical paternalism is not extinct. Indeed it cannot become so, for the exercise of paternalism is essential to the practice of medicine. After all, we are the medical experts, and we are required to recommend what is medically best for the patient. It is therefore arguable that some measure of paternalism is involved in most treatment decisions. This covert paternalism is not necessarily bad, provided it is recognised for what it is, and is used appropriately to guide and support patient autonomy rather than to override it. ( Tweeddale 2002 : 236)

Informed consent and nursing care

The issues of informed consent and the right to refuse consent or receive unwanted information are all issues of moral importance to the nursing profession. Although the doctrine of informed consent has traditionally been discussed primarily in regard to medical treatment, 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 ( Aveyard 2004 ; Cole 2012 ). A rare example of the application of the doctrine of informed consent in nursing care domains can be found in Dudzinski and Shannon’s ( 2006a , 2006b ) case study of a competent patient’s refusal of nursing care, including turning and incontinence management (see also the commentary on this case by Tong (2006) ). In light of this, nurses are no less exempt than are any other health care professionals from the moral standards governing consent procedures, including the moral requirements to:

• •
  

  disclose all relevant information necessary for making an informed decision about proposed nursing cares and procedures

  
  
• •
  

  ensure that the patient understands the information received and the implications of giving consent

  
  
• •
  

  ensure that the consent is given voluntarily (that is, that nurses do not coerce or manipulate the patient into giving consent)

  
  
• •
  

  ensure that the patient has the capacity to make an informed decision, and, if not, that any surrogate decision-making on the patient’s behalf is in accordance with rigorous moral standards.

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.

Confidentiality as an absolute principle

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 had syphilis, thereby risking both her and her offspring being exposed to the disease ( Bok 1980 ). Commenting on the case, the physician wrote:

A single word […] would save her from this terrible fate, yet the physician is fettered hand and foot by his cast-iron code, his tongue is silenced, he cannot lift a finger or utter a word to prevent this catastrophe. ( Bok 1980 : 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:

The circumstances, extreme though they be, cannot be held to justify a breach of the law of professional secrecy […] the doctor ought not to write direct to the railway company without the patient’s consent, and unless he fully understands the nature of the communications to be made. (BMJ 1906, cited in McMahon 2006 : 567)

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 highly cited US legal case Tarasoff v Regents of the University of California (1974) , credited with marking the turning point in contemporary attitudes towards the duty to maintain confidentiality in the professional–client relationship. 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. Although the psychiatric profession ‘reacted with alarm’ to the California Supreme Court’s ruling at the time (it claimed that it would ‘cripple the use of psychotherapy by destroying the confidentiality vital to the psychiatrist–patient relationship’ (p 234)), the ‘duty to warn intended victims’ is now accepted. The ethical and legal issues raised by the landmark Tarasoff case (specifically the requirement to disclose patient confidences in the interests of protecting third parties) were revisited in 2016, when another case Volk v DeMeerieer (in Washington State), again involving the duty to warn third parties, became the subject of public scrutiny and debate ( Piel & Opara 2018 ). 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 had 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 $727 000 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 learned about her husband’s HIV-positive status only 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):

Doctor–patient confidentiality is an important principle and policy-makers are right to do their utmost to uphold it. But human life is even more precious and doctors have a duty to do all they can to protect those whom they believe are at risk.

The Tarasoff case and others like it (such as the Sydney case, cited above) have served to 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 can be considerable). 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 2013 ; Mendelson & Wolf 2017 ). 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? Also, as Bok (1980 : 154) correctly asks: ‘Was it ever meant to stretch so far as to require lying?’ and ‘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.

Confidentiality as a prima-facie principle

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’ ( McCloskey 1980 ; Parker 1974 ; 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, although 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 innocent and uninformed victims.

Unfortunately, the moral principle of confidentiality has sometimes been abused to prevent the disclosure of unscrupulous practices. For example, in the 1987 National Commission of Inquiry into the ‘unfortunate experiment’ at the National Women’s Hospital in New Zealand, it was alleged that nurses were warned not to give evidence to the Inquiry on grounds that ‘it was an offence [under the Hospital Act concerning confidentiality of patient information] to disclose information concerning the condition or medical history of any patient’ (cited in Johnstone 1999a : 26–7). In the early 2000s, respective inquiries into nurse whistleblowing events concerning alleged breaches of patient safety and substandard practices at the MacArthur Health Service (MHS) in the Australian State of New South Wales ( ICAC 2005a , 2005b ) and the Bundaberg Base Hospital (BBH) in the Australian State of Queensland ( Queensland State Archives 2005 ), evidence was submitted suggesting that demands to uphold confidentiality were similarly used as a mechanism to prevent nurses from disclosing their concerns to appropriate authorities when seeking to have the situations they had observed remedied ( Cleary 2014 ).

This misuse of the principle of confidentiality 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 : 149) describes as ‘primeval tribal emotions: the loyalty to self, kin, clansmen, guild members as against … the unrelated, the outsiders, the barbarians’. 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 a hostile environment’.

It is not being suggested 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. Arbitrary, indiscriminate and capricious breaches of confidentiality can have morally undesirable and even devasting consequences for patients / clients, including difficulties in obtaining employment or housing, and forming / maintaining social relationships.

As noted earlier, the principle of confidentiality is at best prima facie in nature, meaning there are situations in which it can be justly overridden. The grounds upon which a decision to disclose information about a patient must, however, be carefully evaluated against and be compliant with formally recognised legal and ethical requirements – noting that upholding the principle of confidentiality is not always straightforward, particularly in cases requiring mandatory reporting (e.g. child abuse and elder abuse). Ethical quandaries posed by mandatory reporting requirements will be considered further in Chapter 12 of this book.

What is dignity?

The notion of dignity, what it is and what entities have it (e.g. whether non-human animals can also be characterised as having dignity) are all highly contested issues ( Düwell 2011 ). In an attempt to unravel the rival meanings in play, it is useful first to consider the etymological origins and dictionary definitions of the term.

The word dignity comes from the Latin dignitas , meaning ‘merit’, and dignus , meaning ‘worthy’. Today, there are as many definitions of ‘dignity’ as there are dictionaries. Collins Australian dictionary (2011 : 470), for example, defines dignity as:

[1] … a formal, stately, or grave bearing … [2] the state or quality of being worthy of honour … [3] relative importance; rank … [4] sense of self importance …

According to the Oxford English dictionary (2014 online), dignity is:

1. a. The quality of being worthy or honourable; worthiness, worth, nobleness, excellence … 2. a. Honourable or high estate, position, or estimation … 4. a. Nobility or befitting elevation of aspect, manner, or style

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

(T)he publique worth of a man [sic], which is the Value set on him [sic] by the Common-Wealth … And this Value of him [sic] by the commonwealth, is understood, by offices of Command, Judicature, public Employment; or by Names and Titles, introduced for distinction of such Value.

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:

Morality or virtue – and humanity so far as it is capable of morality – alone has dignity. In this respect it cannot be compared with things that have economic value (a market price) or even with things that have an aesthetic value (a fancy price). The incomparable worth of a good man [sic] springs from his [sic] being a [moral] law making member in a kingdom of ends. ( Kant 1972 : 35)

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 : 23). 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’.

Others meanwhile have suggested that a more fruitful approach to defining dignity is by taking into account what dignity is not and the various forms in which ‘ dignity violations ’ can manifest, such as humiliation, degradation and dehumanisation ( Kaufmann et al 2011a , 2011b ).

Some of the most revealing and instructive definitions of dignity, however, come from a group of undergraduate nursing students completing the first year of their university nursing program. Comments were sought from the students after their clinical placement at a residential care home for the elderly. The results are summarised as follows.

• •
  

  ‘Dignity is concerned with self-respect, and how this is related to society – your social worth.’

  
  
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  ‘Dignity is a feeling of pride … of feeling good about yourself.’

  
  
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  ‘Dignity is having pride without shame.’

  
  
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  ‘Dignity is being accepting of one’s self, and of what’s to come … the problem is, however, that a lot of people base their self-worth on what other people think of them.’

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

• •
  

  ‘Dignity and dying with dignity is being happy with oneself, and what one has achieved in life.’

  
  
• •
  

  ‘Dying with dignity is dying the way you want to die.’

  
  
• •
  

  ‘Dignity and dying with dignity is maintaining self-value, self-respect and self-image …’

  
  
• •
  

  ‘Dying with dignity is having no pain, no fear. Feeling valued, and having your opinions valued. Yes. That’s it! It involves having control and being valued.’

  
  
• •
  

  ‘Dying with dignity is putting yourself above whatever is going on around you.’

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? Further, what is meant by the ‘right to dignity’?

Dignity and the right to dignity

Despite the variety of definitions and interpretations of the notion ‘dignity’, it may be broadly understood as belonging to a cluster of interrelated concepts, namely: respect, status, privacy, self-esteem and (freedom from) shame ( McGee 2011 : ix). Some suggest that a modern account of human dignity should minimally encapsulate the following elements, notably that the ascription of the status of human dignity:

• •
  

  applies equally to all human beings

  
  
• •
  

  is other regarding (i.e. it aims to regulate the relationships between humans and between humans and political institutions)

  
  
• •
  

  affirms the inherent moral worth of the individual

  
  
• •
  

  has overriding moral authority in the context of human rights (i.e. as a normative consideration it ‘trumps’ other considerations) ( Düwell 2011 ).

Taking these concepts and attributes into account, dignity and the right to dignity in health care (encompassing the rights to uphold one’s own dignity and to be treated with dignity by others) may thus 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 by others, and who ought to be supported and facilitated in their attempts to maintain their humanity, self-respect and a sense of their own moral worth and self-esteem when in a health care context.

Dignity violations

Before concluding this discussion on the right to dignity, some further 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:

it seems we all know when our dignity is violated or impugned. Perform the following experiment: recall, in detail, an incident from your own life in which your dignity was violated, for whatever reason. If you will immerse yourself in the memory, powerful feelings will likely arise – of anger, shame, powerlessness, despair. When you connect with the power of these feelings, it seems intuitively obvious that such feelings, particularly if evoked repetitively, could have deleterious impacts on health. Yet most of us are relatively privileged, we live in a generally dignity-affirming environment, and suffer only the occasional lapse of dignity. However, many people live constantly in a dignity-impugning environment, in which affirmations of dignity may be the exceptional occurrence. An exploration of the meanings of dignity and the forms of its violation – and the impact on physical, mental, and social well-being – may help uncover a new universe of human suffering, for which the biomedical language may be inapt and even inept. ( Mann 1997 : 11–12)

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 ). Realisation of this connection, meanwhile, serves to reveal also ‘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 ).