After reading “Dignitarian Medical Ethics” assigned attached below, in an initial post consider how the concept of conferring patient dignity as offered in the article applies to the need for cultural competence in health care.
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AbstrAct Philosophers and bioethicists are typically sceptical about invocations of dignity in ethical debates. Many believe that dignity is essentially devoid of meaning: either a mere rhetorical gesture used in the absence of good argument or a faddish term for existing values like autonomy and respect. On the other hand, the patient experience of dignity is a substantial area of research in healthcare fields like nursing and palliative care. In this paper, it is argued that philosophers have much to learn from the concrete patient experiences described in healthcare literature. Dignity is conferred on people when they are treated as having equal status, something the sick and frail are often denied in healthcare settings. The importance of equal status as a unique value has been forcefully argued and widely recognised in political philosophy in the last 15 years. This paper brings medical ethics up to date with philosophical discussion about the value of equal status by developing an equal status conception of dignity.
IntroductIon The field of medical ethics is already saturated with ethical terms and phrases—the right to life, autonomy, respect, informed consent and benevo- lence, to name just a few. ‘Dignity’ has never really taken hold to the same extent. Although many commentators in the field of medical ethics use the term, it does not enjoy the philosophical respect- ability of other key terms. It has not been subject to the same kind of extensive philosophical analysis, and there is an absence of agreement as to what it really means.
When Ruth Macklin declared that ‘dignity is a useless concept,’ she almost certainly stated explic- itly what many philosophers already believed.1 ‘Dignity’, she argued, is either just a rhetorical device used when one has run out of good argu- ments, or else nothing other than a fashionable new term for existing values like autonomy or respect for persons. There is certainly no evidence that appeals to dignity have done anything to advance intractable debates around the right to life, eutha- nasia and abortion.
There are further reasons to be sceptical about dignity. The other main area in which the phrase is repeatedly used is human rights law. References to dignity are scattered throughout international and domestic human rights declarations and conven- tions. Yet here too there is no real attempt to explain what it means, or why the supposed dignity of every human being should endow them with human rights, or how human rights protect that dignity. Indeed, in the field of human rights law we have quite explicit reasons to be sceptical about dignity. The historical record shows that those charged with drafting the Universal Declaration of
Human Rights could not agree on the foundations for those rights, that is, what it is about human beings that justifies them. As Jacques Maritain said, ‘Yes, we agree about the rights on condition that no one asks us why’: quoted in ref 2, ‘Dignity’ was, and remains, a convenient term to cover over that lack of agreement. What does ‘dignity’ mean? Whatever you want it to mean!
At direct odds with this weighty scepticism, the fields of nursing ethics, nursing home care, palli- ative care and research broadly concerned with the ‘patient experience’ are awash with research on dignity.3–6 Much of this literature is a response to patients’ persistent complaints that healthcare institutions rob them of their dignity. Hospital websites and broader public policy have increas- ingly committed to improving the quality of care for patients, nursing home residents and the dying, by improving respect for their dignity.
How do we make sense of this apparent discon- nect between philosophical scepticism about dignity on the one hand, and the enormous prac- tical concern for dignity in healthcare settings on the other? One easy response is to declare that patients and healthcare researchers are also guilty of using a term devoid of unique content, or for purely rhetorical purposes. Indeed, Macklin’s scep- ticism about dignity could apply to healthcare liter- ature with some force. I have argued elsewhere that the methodologies used in that field are somewhat problematic.7 The rich qualitative data based on the responses of various patient groups and healthcare practitioners report on the experiences of these groups by presenting long lists of items or categories without any attempt to explain what unifies them specifically under the value of dignity. More impor- tantly, patients and healthcare practitioners are no more likely to have a clear sense of what ‘dignity’ means than do philosophers. As such, simply asking them directly to talk about dignity risks conflating dignity with everything that contributes to good quality healthcare, including autonomy, compas- sion, benevolence, and so on. I have argued that this is exactly what happens in much of the qualitative healthcare literature.
Despite these reservations, I don’t doubt that patients and healthcare practitioners, and the liter- ature that represents their experiences, identify a unique and important value, which is indeed the value of dignity. Moreover, the value of dignity is not captured by existing values like autonomy, respect, benevolence, and so on.
I will show that careful analysis of the ‘patient-ex- perience’ reveals that what patients rail against is their routine relegation to an inferior social rank in healthcare settings. In developing this concern into a conception of dignity, and applying it to health- care, this paper will bring medical ethics up to date
Dignitarian medical ethics Linda Barclay
to cite: Barclay L. J Med Ethics 2018;44:62–67.
correspondence to Dr Linda Barclay, Department of Philosophy, Monash University, Clayton, VIC 3800, Australia; linda. barclay@ monash. edu
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with developments in political philosophy, where the impor- tance of equal status has been forcefully recognised in the last 20 years or so.8–12
WhAt Is dIgnIty? Michael Rosen13 and Jeremy Waldron14 have analysed the various meanings or ‘strands’ of dignity throughout the history of political and legal thought.15 ‘Dignity’ can and has been used to mean many different things, which contributes to its very deconstructed state in healthcare literature and policy, as well as to its multiple meanings in legal contexts.16 Given the multi- faceted meaning of ‘dignity’ in all of these areas, I see no reason to try and corral this diversity into a single conception. Rather, I want to develop one specific conception of dignity and show why it is important, including in healthcare settings. The concep- tion of dignity I develop in this paper is not incompatible with other notions of dignity, and will often compliment them.
One distinction is particularly important for my purposes. We can think of dignity as something inherent in persons, or alternatively as something conferred upon them. It is the latter idea that I develop. This is the kind of conception of dignity which falls under Waldron’s broad description of dignity as status.14 It is different from dignity as worth, which conceives of a person’s dignity as inherent in them, by virtue of their posses- sion of a valuable nature or valuable capacities. It is the status conception that best seems to capture the idea that dignity in not (only) inherent in people ‘but is also at least partly constituted by distinctive forms of interpersonal interaction in which it is expressed’ (p 160).17
There are potentially numerous ways to expand on the idea of dignity as status. Historically, dignity as status has been connected to social hierarchies. Rosen suggests that dignity ‘originated as a concept that denoted high social status and the honors and respectful treatment that are due to someone who occupied that position’ (p 11).13 The respectful treatment due to a social superior might have included tugging at the forelock, curtseying and bowing, and particular forms of deferential or obsequious address.
Waldron argues in favour of what Rosen dubs a more recent ‘expanding circle’ narrative of status dignity that includes most human beings.14 According to Waldron, the prevailing concep- tion of status dignity for us is equal status, for the ‘modern notion of human dignity involves an upwards equalization of rank, so that we now try to accord every human being something of the dignity, rank, and expectation of respect that was formerly accorded to nobility’ (p 33).14
On my conception of dignity, dignity is conferred in social relations where we follow social norms for treating people as sharing equal status. When we do so, we communicate to others that we consider them our social equals. To enjoy dignity is to reliably be treated in accordance with such norms. Conversely, people do not enjoy dignity when they are routinely treated in a way that relegates them to a lower social status. Such routine behaviour communicates both to its victims (and to others) that they are believed to be social inferiors.
This is somewhat abstract. What we want to know is how dignity is conferred on patients in their concrete interactions with healthcare providers. How should such providers conduct their exchanges to ensure that they treat those for whom they care as social equals? Dignity as status in general is always much easier to describe in the breach. It is intuitively clear that tugging at the forelock, and bowing and scrapping, are at odds with equal status. It is more challenging to describe those positive
social relations that constitute it. So let us begin in the breach, and describe some common examples.
Nola has dementia, and has recently moved into a nursing home. Nola needs some assistance with personal care, medica- tions and decision-making. Nola and her children are unhappy with some of the behaviour of healthcare staff. She does not always get a daily shower, and is sometimes forced to wear soiled and dishevelled clothing. She has been placed on the toilet with the door left open so staff can keep an eye on her while they tidy her bed. Some staff are rude and dismissive when they perceive her as asking too much of them, whereas others have a tendency to speak to her as though she is a small child. The manager of the facility enrols Nola in a range of social activities without consulting with her.
Ahmed has been diagnosed with leukaemia and has spent 3 months in hospital. He shares a room and a bathroom with three other men. The room is noisy, with constant sounds of other patients’ televisions, radios and visitors. The ward is also noisy at night, as nurses go about their duties with little regard for sleeping patients. Despite keeping his curtain closed for privacy, it is constantly opened without warning by nurses, doctors, allied health professionals, cleaners and meal deliverers. The shared bathroom often becomes soiled during the course of the day. When he complains about his inability to rest, and the lack of privacy and cleanliness, Ahmed is told he is ungrateful.
Glenda has been admitted to a mixed-sex ward with an acute bowel obstruction. She is mortified to find herself sharing a ward with three men, especially given her frequent use of the bathroom and the nature of the conversations she has with healthcare staff. One of the men on the ward ceaselessly engages Glenda in conversation that she finds intrusive and unsettling. She has requested a move to a women’s ward, but has been told there are no such beds available.
Something is clearly not quite right about the care that Nola, Ahmed and Glenda each receive. Most of us can readily appre- ciate their distress. As I have indicated, the qualitative literature is full of examples of this kind, which are provided by patients in response to questions about their experience (or lack thereof) of dignity.
Suzy Killmister has offered one analysis of cases such as these18 which I will show has considerable appeal but is none- theless insufficient. She argues that in these kinds of examples patients are unable to uphold their standards and values, which can cause significant humiliation. Nola, Ahmed and Glenda have basic standards around privacy that are routinely violated by healthcare providers, as are Nola and Ahmed’s standards of cleanliness. Glenda’s standards of privacy and decorum concerning interactions with the opposite sex are also violated. Many of Nola’s standards and values are likely violated when she is spoken to as though she is a small child, and enrolled in all manner of activities in which she finds no purpose or value. Accordingly, Killmister argues that healthcare practitioners respect a patient’s dignity when they refrain from transgressing the patient’s standards and values, or refrain from forcing the patient to transgress his or her own standards and values.18 Thus, ‘part of the trauma of undergoing medical procedures is the shame we experience in having our bodies exposed, the public nature of otherwise deeply private bodily functions, and the child-like dependence to which we are reduced. The reason why, for example, being left semi-naked on a hospital trolley is experienced as humiliation, and thus as a violation of dignity, is that the patient has standards of public decency that they strive to maintain in their daily lives and which they are here being forced to abandon’ (p 162).18
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One benefit of Killmister’s analysis is that it can also make sense of the felt loss of dignity that people report even without the intervening behaviour of others. Patients feel a loss of dignity just by virtue of increasing levels of dependence, or uncontrolled pain, or loss of bowel function, for example.5 6 19 The failing body can itself jeopardise a patient’s ability to uphold, and continue to live in accordance with, her standards and values.
Killmister’s analysis is intuitively compelling. It captures something important at stake when patients complain of the loss of dignity. That patients are often shamed and humiliated in such situations further supports her analysis, for the most common view about shame is ‘…that it is an intensely negative emotion directed at the self as a result of having failed to live up to some standard, ideal, or norm’ (p 568).20 While there is dispute about whether or not a person has to accept the standards in order to feel shamed for falling short of them, there is no dispute that feelings of shame and humiliation are provoked by failing to live up to one’s standards and ideals.
I suggest that Killmister’s view is best understood as an account of dignity as bearing. We recognise dignity in upholding the demands of morality, in spite of our countervailing natural inclinations or challenging circumstances.13 21 Killmister herself does not conceive of the standards and values at stake as necessarily moral. Moreover, she strongly implies they can be entirely individual or subjective, by referring to them as ‘one’s own’ standards and values. Nevertheless, the intuitive appeal of her analysis rests on the widely recognised value of dignified bearing or comportment in upholding the demands of standards and values.22 We admire those people who maintain a digni- fied bearing under even extreme conditions, such as Nelson Mandela. Many of us are disgusted by Donald Trump’s conduct, which is frequently characterised as undignified (for any adult, whatever their formal role). In short, most of us tend to describe as undignified failure to live up to standards and values due to weak will, poor character, cowardice or wantonness.
Nevertheless, Killmister’s analysis, and any account of dignity as bearing, does not sufficiently describe the importance of what is at stake in these cases. There is broader conception of dignity at play in most of these examples, of which loss of dignity as bearing is but one part. Violating a person’s standards and values, or placing her in a situation where she is forced to trans- gress them, is one of the ways in which we can treat a person as a social inferior. But it is just one such way, and should not deflect attention from the arguably more important ideal of dignity conferred by social relations where all enjoy equal status.
Others not only violate Nola, Ahmed and Glenda’s values and standards. They speak to them rudely, or with condescen- sion; nurses fail to keep their voices down and allow them to rest; they are spoken to impatiently and made to feel like they are nuisances. In these cases, healthcare staff display a general tendency to disregard Nola, Ahmed and Glenda, which includes, but goes beyond, violating their standards and values. They fail to treat them as though they have equal status. They treat them as social inferiors. Part of treating them as social inferiors is to disregard standards and values around privacy, decorum and respect that are not only held by Nola, Ahmed and Glenda, but by most of us who appreciate the force of these examples.
Consider similar qualitative research in other areas. Based on extensive interviews, Nora Jacobson documents how the day-to-day exchanges of the sick, homeless and poor are char- acterised by rudeness, indifference, condescension, contempt, exclusion and vilification. Her research participants had a vast range of phrases to describe how it felt to be subject to such social exchanges: ‘like a child’, ‘like you are an inch high’, ‘like
an animal’, ‘like a dog’, ‘like a bum’, ‘like a criminal’, ‘like a second-class citizen’, ‘like dirt’, ‘like garbage’, ‘like scum’, ‘like a piece of shit’, ‘like nothing’. Jacobson says of her participants that ‘their language is replete with denotations of (lesser) size or position’ (p 87).23
If we want to move from the breach to say something more concrete, we need to know what forms of social exchange treat people with equal status, and thus confer dignity. I argue that dignity is secured when our exchanges with each other conform to whatever our social norms are for treating one another as social equals. Whether any given token of social exchange is dignity conferring or not depends on the social norms in place. Just as social norms determine that tugging at the forelock and bowing and scrapping are behaviours for treating royalty as social superiors, so too our social norms determine that other forms of social exchange are ways to treat others as social equals. Earlier defenders of dignity lauded obsequious behaviour befitting social inferiority. There was dignity in knowing and accepting one’s place in the social hierarchy, and conducting oneself accord- ingly.13 The modern attachment to dignity as equal status largely rejects behaviour connected to status hierarchies. We are often repelled by people who expect us to treat them as though they have higher status, and pity those who are content with displays of their low social status.
Cheshire Calhoun argues that behaviour in accordance with social norms plays an important communicative role.24 While Calhoun’s interest is with civility, with respect to dignity we can say that it communicates to its recipients that they are consid- ered social equals by those who engage with them. Successfully communicating this moral attitude is contingent on following shared social norms which express equal status. It is only because there are widely shared norms, which are ‘often codified, social rules’ for what counts as treating other as social equals, that we can successfully communicate an attitude of regard for others as our social equals (p 260).24
In the interpersonal realm, actually treating people with equal status amounts to just the same thing as following social norms that communicate equal status. Equal status is largely constituted by nothing other than such norm-governed behaviour. Whether or not a person has greater worth or value than the rest of us is independent of how we treat her. Her status, however, is not. We can readily appreciate that a judge is of no greater worth than you or I, but she still enjoys a different status, at least in the context of her professional role, by virtue of norms governing how we treat her: we stand up when she enters to room, we refer to her as ‘Your Honour’, and so on. Dignity as status is distinct from dignity as worth because status does not exist independently of the particular forms of norm-governed social relations that constitute it. In the interpersonal realm, treating people as social equals is to follow social norms that express or communicate equal status.
It is common to suspend social norms for treating others as one’s social equal in healthcare settings. Just being a patient, as with being homeless, or poor, is a stigma, a feature that is taken to be discrediting, something at odds with what we take a worthy and valued person to be.25 Why being sick or frail is a stigma is beyond the scope of this paper. But one of the key consequences of stigma is that norms for treating people as having equal status are violated. Especially in institutional care settings, doctors and nurses often do not interact with their patients as they do with their neighbours, or their colleagues or with shopkeepers. They are sometimes rude, impolite and take themselves to be justified in suspending all manner of widely shared social norms around privacy, respect, decorum, and so on. As such they treat
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their patients as social inferiors. The qualitative literature tells us that this is communicated effectively to patients, and keenly felt. Patients consistently identify being patronised, spoken to rudely, or made to feel as though they are an inconvenience, as among the factors that threaten their dignity.26–29 As Killmister notes, they feel humiliation and shame when their privacy is not respected, or when norms of decorum are ignored.27 30 31 But this is not only because they are prevented from upholding their own standards and values, which is indeed felt as shameful. They are also humiliated by the clear message that healthcare providers do not regard them as their social equals, and as such do not perceive that respecting such shared norms should govern their exchanges.
On my conception of dignity, it is something conferred in social relations where we follow social norms for treating people as having equal status. When we do so, we communi- cate to others that we consider them our social equals. To enjoy dignity is to reliably be treated in accordance with such norms. Conversely, people do not enjoy dignity when they are routinely treated in a way that relegates them to a lower social status. Such behaviour communicates both to its victims (and to others) that they are believed to be of lower social status. One way to be so treated is when others do not uphold norms around polite- ness, respect, privacy, decorum, and so on, which are among our norms that govern exchanges between equals. These are among the key social norms which, when followed, constitute dignity as equal status.
thE morAl ImportAncE of dIgnIty We are now in a position to see that Macklin is wrong to claim that dignity is a useless concept. Respecting persons and respecting their autonomy are not coextensive with treating them with dignity.
While Macklin is not particularly forthcoming about what she means by respect for persons, she apparently has in mind something like the Kantian notion of treating people always as ends: she refers to examples of discrimination and abuse, and the need for voluntary, informed consent to medical treatment and research. However, a very broad range of interpersonal exchanges can fail to treat people as social equals but have nothing to do with discrimination and abuse, or more generally not being treated as an end in the Kantian sense. Patients can be treated with scrupulous care in regard to their legal entitlements, with respect to discrimination law, with respect to informed consent, and so on: but when others shun and exclude, when they are rude, contemptuous, condescending and hostile, when they ignore basic etiquette around privacy, cleanliness and norms of decorum, then such patients do not enjoy dignity. They are relegated to an inferior social status.
It might be argued that dignity is coextensive with a less Kantian notion of respect. I have no objection to the claim that treating people as social equals is a way of treating them with respect. To that extent, dignity is connected to respect for persons. But it is hardly synonymous with it. Respect is a very expansive concept, far exceeding displays of equal status. Indeed, in a wide range of contexts we treat people with respect precisely by following norms that express their higher status, as when we defer to our elders or stand for a judge. So rather vague appeals to respect for persons fail to mark out the more specific concept of dignity conferred in social relations in which all enjoy equal status.
Similarly, failure to respect a person’s autonomy can certainly be an effective way to lower his status. This is a common experi- ence for people in institutional care, especially when others treat
them as though they are children by failing to involve them in key decisions about their healthcare. But there are many social exchanges that fail to confer dignity which have nothing to do with respect for autonomy. Being treated with contempt, conde- scension, rudeness, hostility and vilification does not necessarily interfere with self-direction or the pursuit of one’s freely chosen ends.
The conception of dignity I have identified is not equivalent to other moral values in healthcare, although it can certainly overlap with some of them (just as respect can overlap with autonomy, or benevolence with compassion). It marks out a specific area of concern spoken of over and again by patients, namely the failure to be treated as a social equal in their exchanges with those who provide their care.
There is one final way to support Macklin’s scepticism about dignity. It might be argued that dignity as equal status is just not of great moral importance. In contrast with life and death issues like abortion and euthanasia, or with issues like organ sales or genetic enhancement, being treated as having equal status might look like a fairly trivial issue.
Scepticism about the importance of dignity as equal status is mistaken, perhaps dangerously so. Not only can the failure to be treated as a social equal cause significant humiliation and shame, it is plausible to suggest it is also bound up with maltreatment and abuse. I shall develop each of these arguments in turn.
Killmister identifies avoidance of shame and humiliation as one compelling reason to treat people with dignity. Part of the value of dignity is that the social relations which confer it avoid humiliating people and inflicting blows to their self-esteem and self-worth.16 Indeed, it has been suggested that non-humiliation is the paradigm meaning of dignity: Avishai Margalit boldly claims that ‘if there is no concept of human dignity, then there is no concept of humiliation either’ (p 149).32 33 34
Human beings are highly attuned to the regard which others have for us.34 It is common therefore to feel humiliated when treated as a social inferior. Furthermore, additional harms tend to follow from humiliation and the damaged self-worth and self-esteem it can cause, namely, diminished agency. Joel Anderson and Axel Honneth argue that being able to trust our own feelings and intuitions, to stand up for what we believe in, and to consider our projects and accomplishments worth- while, are all central to autonomous agency. But such self-trust, self-esteem and self-worth only develop within social relations that nurture and sustain them. Social relations characterised by disrespect and humiliation are at odds with the robust capacity for effective agency.35 Thus, it is not uncommon to notice that people who are institutionalised, and subject to negative stereotypes, become less responsible for their own decision-making and increasingly willing to rely on others to fulfil their needs.36 37
Although of great moral importance, I do not believe that avoidance of humiliation and reduced agency exhaust the reasons we have for treating people as social equals. Apart from anything else, it would follow that we have no reason to treat people with severe dementia, or other forms of severe cognitive impairment, with dignity. Many such individuals are not capable of feelings of humiliation, nor of independent agency. But surely we should say that it would be wrong to leave such an individual exposed on the toilet, or left to lie naked on a hospital trolley open to public view, or to be spoken to with contempt and ridicule. If so, then we need to look beyond feelings of humiliation and reduced agency for a full account of the wrongness of treating patients as social inferiors. We need to look at what further harms relations of social inequality can inflict.
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Specifically, when people are regularly treated as social infe- riors, they can be particularly vulnerable to maltreatment and abuse. I suggested earlier that stigma often prompts the tendency to treat some groups as social inferiors. As Sally Haslanger claims, ‘the harm of stigma…is not [only] private or [solely] psychic. It is a matter of public standing. Such social meanings are the threads in the fabric of culture. They matter. Social meanings have a significant effect on how we interact with each other and distribute power, opportunity, and prestige’ (p 6).38
The core idea is that the way we treat one another in our daily exchanges both arises from, but also reinforces, social meanings that can facilitate mistreatment. Treating people as social infe- riors has social meaning of this nature.
To understand this, we first need to understand the concept of ‘schemas’. Schemas consist of ‘culturally shared concepts, beliefs and other attitudes that enable us to interpret and orga- nize information and coordinate action, thought and affect’ (p 126).39 They are social meanings that shape perception, affect and behavioural dispositions. Schemas are like ‘shared tools that enable us to interpret and coordinate with each other’ (p 5).40
To understand how schemas produce material effects, consider the example of caring for infants. While both parents of an infant may wish to parent equally, only the mother is entitled to leave from work. Because the couple cannot afford for the father to quit his job, and given the lack of child care facilities, the mother takes leave. Based on her experience and routines, she continues to take long-term primary responsibility for the infant by returning to part-time work. The effect is that over time men typically acquire considerably more by way of salary and other resources which gives them more power in the home and at work.
Our culturally shared schemas partly explain the emergence of this material inequality. That mothers should care for infants rather than fathers, that such care constitutes the best for the infant and that mothers should prioritise such duties over career are constituents of cultural schemas concerning the care of infants, which in turn affect how we organise resources (lack of paternity leave, lack of child care resources).
Importantly, the organisation of these resources reinforces the cultural schemas which shaped them. It looks to be just a natural fact about women and men that women are more suited to care for young infants while men are more suited to pursue career achievement. As Haslanger puts it, schemas shape resources that fit and reinforce those schemas. This false appearance of naturalness “is easily generated due to the ‘loopiness’ of social structures: we respond to the world that has been shaped to trigger those very responses without being conscious of the shaping, so our responses seem to be called for by the way the world is” (p 468).41
Stigmatised schemas clearly shape the way in which the sick and frail are cared for. Such schemas influence the rude, conde- scending and dismissive way in which healthcare providers sometimes speak to patients, the way they avoidably undercut patients’ agency and control, and other ways in which they violate social norms for interacting with people of equal status. These behaviours towards the sick and frail reinforce the stigma which drives them. When we observe people in dishevelled and soiled clothing, exposed for all to see during toileting and show- ering, spoken to with either condescension or impatience and disregard, the schemas which shape that way of perceiving and responding to such individuals are reinforced: they look to be naturally helpless, incapable and inferior.
When we consider people with dementia or other forms of serious cognitive impairment, we have especially urgent reasons to be concerned with behaviour that arises from, and reinforces,
stigma. The failure to treat people with cognitive impairments as social equals, and the subsequent reinforcement of stigmatised cultural schemas around their inferiority, can perpetuate even greater abuses. We know that people with cognitive impairments are subject to violence, neglect and maltreatment. In numbers far exceeding the non-disabled population, people with cogni- tive impairments, especially those who live in institutions, have been killed, are sexually abused, bullied, left to suffer and die from easily preventable and treatable disease, institutionalised in squalid and unsafe environments, and denied nurture and love.42–44
Dehumanising stigma around cognitive impairment plays some causal role in such maltreatment. To routinely engage with such people as though they are helpless, to subject them to conde- scension, rudeness and contempt, to violate social norms to do with privacy, decorum and dignified bearing, is to sustain social meanings around frailty, sickness and disability that are a fertile breeding ground for maltreatment. We accept that the causes of violence against women cannot be isolated from a broader context of gender inequality.45 46 Essentially, the same claim is being made here about maltreatment and cognitive impairment.
The claim is not that failure of healthcare staff to treat people with cognitive impairments as social equals is the sole or direct cause of abuse. We know of many factors that facilitate the abuse to which people with cognitive impairments are vulnerable: poor regulation of institutions, the relative isolation of people with cognitive impair- ments and the inability or unwillingness to report abuse have all been identified as contributing causes. But routine behaviours that lower their social status also play a role. The failure to treat people with cognitive impairments as our social equals in our everyday exchanges is part of a wider pattern of cultural, political and legal maltreatment. It is harmful in ways that go beyond its contribution to humiliation and reduced agency.
conclusIon Dignity is not a useless concept, and there are compelling reasons for why it has been the subject of such sustained focus in healthcare policy and literature. There are many factors that patients identify as threatening their dignity. Most of them are best understood as behaviours that treat them as though they are of lower social status. Most of us care deeply that others treat us as social equals, and patients do too. It is humiliating and sometimes debilitating to be treated as a social inferior. Those less vulnerable to feelings of humiliation are not thereby secure however. To the contrary, such individuals might be vulnerable to even greater harm when others routinely engage with them in ways that sustain stigmatised social meanings around their lower social status. Dignity matters, and it remains in deficit in many healthcare settings, just as the sick, frail and old have been telling us for years.
competing interests None declared.
provenance and peer review Not commissioned; externally peer reviewed.
© Article author(s) (or their employer(s) unless otherwise stated in the text of the article) 2018. All rights reserved. No commercial use is permitted unless otherwise expressly granted.
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