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The Importance of Patient Dignity in Care at the End of Life

Metrics details. This paper has its origins in Jonathan Mann's insight that the experience of dignity may explain the reciprocal relationships between health and human rights. It follows his call for a taxonomy of dignity: "a coherent vocabulary and framework to characterize dignity. Grounded theory procedures were use to analyze literature pertaining to dignity and to conduct and analyze 64 semi-structured interviews with persons marginalized by their health or social status, individuals who provide health or social services to these populations, and people working in the field of health and human rights.

The taxonomy presented identifies two main forms of dignity—human dignity and social dignity—and describes several elements of these forms, including the social processes that violate or promote them, the conditions under which such violations and promotions occur, the objects of violation and promotion, and the consequences of dignity violation.

Together, these forms and elements point to a theory of dignity as a quality of individuals and collectives that is constituted through interaction and interpretation and structured by conditions pertaining to actors, relationships, settings, and the broader social order.

The taxonomy has several implications for work in health and human rights. It suggests a map to possible points of intervention and provides a language in which to talk about dignity.

Peer Review reports. Dignity has long been prominent in the discourses of both health and human rights. In health and healthcare, dignity is featured in many professional practice codes, is a key concept in fields like palliative and long-term care, and also arises in discussions of healthcare service delivery performance and reform [ 1 — 5 ].

Although somewhat controversial in North America, dignity is central to the "new bioethics" that has emerged in Europe over the last decade [ 6 — 8 ]. Dignity and human rights are historically and conceptually coupled in the Universal Declaration of Human Rights [ 9 — 11 ].

Actions taken to respect, protect, and fulfill human rights promote dignity, while those that violate human rights also violate dignity. As signaled by its title, this paper has its origins in Jonathan Mann's insight that dignity is not only fundamental to health and human rights separately, but may actually serve to explain the link between the two: that is, the relationships between the societal achievement, or failure, of human rights goals and individual and collective health status may be mediated by the experience of dignity [ 12 ].

The research upon which this paper is based follows his call for work aimed at developing a taxonomy of dignity: "a coherent vocabulary and framework to characterize dignity" and its violation [ 13 ]. Such a taxonomy should describe and classify the forms of dignity, the elements that comprise these forms, and the relationships among the elements, thus expanding understanding of the concept and providing an empirical base from which to develop strategies for enhancing human well-being.

Grounded theory is an interpretive research approach with theoretical roots in symbolic interactionism and methodological roots in Chicago School sociology [ 14 , 15 ]. Its practitioners use qualitative methods like interviews and participant observation to gather data, which then are analyzed using the techniques of constant comparison and dimensional analysis [ 15 — 17 ].

The goal of a grounded theory analysis is to derive from the data concepts, conceptual categories, and linkages between categories; the product is a theory of a phenomenon grounded in the lived experience of research participants, rather than an analysis that enlists existing theory to explicate that experience.

Unlike some other interpretive methodologies, grounded theory focuses on variation and elaborates complexity, seeking to show how social process makes meaning and how contextual conditions structure social process.

These characteristics make grounded theory an excellent methodology to use when investigating concepts like dignity that are simultaneously extremely abstract and strongly rooted in tangible aspects of social life. In addition, because grounded theory "fosters [the integration of] subjective experience with social conditions," it is a valuable tool for social justice research [ 18 ].

The methods used for the work reported here were a review and analysis of the literature pertaining to dignity and a series of interviews with individuals for whom dignity is important. The conduct and findings of the literature review have been described at length elsewhere [ 19 ]. The data for the analysis described in this paper were drawn from the literature and from 64 interviews conducted with individuals from one or more of three groups: persons marginalized by their health or social status e.

As is appropriate in grounded theory, all sampling was purposeful. Marginalized individuals were targeted because the extant dignity literature suggested that such individuals are particularly prone to dignity violation. Providers were sampled when the analysis of early data suggested that their perspectives would be important to the developing theory. Health and human rights practitioners were recruited primarily to garner their insights about the political meanings and uses of dignity; these interviews were somewhat less focused on personal experience than were the others.

Participants were recruited by flyer and word of mouth marginalized individuals and service providers and by invitation health and human rights practitioners. These methods ensured the salience of the topic for the individuals who agreed to participate. With several exceptions in the groups of providers and health and human rights practitioners, all interviews were conducted with people living and working in Toronto, Ontario, Canada.

The semi-structured interviews, which lasted between 45—90 minutes, used open-ended questions to elicit individuals' detailed accounts of their own experiences of dignity and their understandings of the meaning, impact, and consequences of those experiences.

The author and two trained interviewers conducted all interviews; this group met to debrief and discuss the interview questions and responses as the project unfolded.

All interviews were audio-recorded and transcribed verbatim. The research ethics board at the Centre for Addiction and Mental Health in Toronto approved the interview protocol. Participants, who were promised anonymity, provided signed informed consent. Analysis of the interview data commenced after the first interview and included several steps: coding of transcripts using a coding paradigm from Schatzman's formulation of dimensional analysis, constant comparison of concepts and conditions derived from the data, development of higher order categories to encompass and link these concepts and conditions, and extensive memo writing to track and explore developing ideas [ 16 , 17 ].

As the analysis proceeded, it shaped the interview questions posed to participants as well as the decision of which participants to recruit , thus allowing a check on the relevance and appropriateness of the interpretation. Analytic work on the taxonomy described here ended once there was a good fit between the data and the categories that make up the taxonomy; that is, the taxonomic elements account for all of the grounded data.

A short history of dignity has three main episodes. In the first, man has dignity because he has been made in the image of God. This distinction marks the human species as superior to the rest of creation [ 20 — 22 ]. In the second, dignity resides in social hierarchy and is closely tied to a system of rank. Dignity is both relative—nobles are more dignified than peasants—and absolute—bringing with it a set of duties and privileges tied to office [ 23 , 24 ].

The third episode introduces the Kantian conception of dignity as grounded in the quality of rational agency—the ability of individuals to make moral choices and thus to self-govern [ 23 , 25 — 27 ]. Dignity is thus an attribute that pertains to humanity as a collective entity, one that attaches only to certain classes of persons, and a characteristic inherent in all individuals. Contemporary work on dignity, ongoing in disciplines as diverse as theology, philosophy, law, political theory, sociology, medicine, and nursing, is varied and rich, marking dignity as a theoretical and practical concept of enduring fascination.

In addition to its foundational roles in health and human rights, dignity also figures prominently in constitutional law, in social justice, and in ethnographic accounts of the lives of poor and oppressed people [ 28 — 35 ].

Despite, or perhaps because of, this ubiquity, the idea of dignity has been criticized for being vague and contradictory [ 36 — 38 ]. The review and analysis of the literature mentioned earlier in this paper led to an understanding that dignity has two complementary but distinct forms: human dignity and social dignity [ 19 ].

Human dignity is the abstract, universal quality of value that belongs to every human being simply by virtue of being human. It is held by the species, by collectives groups or peoples , and by individuals. It admits of no quantity and cannot be created or destroyed. Social dignity is generated in the interactions between and amongst individuals, collectives, and societies.

It may be divided into two types: dignity-of-self and dignity-in-relation. Dignity-of-self is a quality of self-respect and self-worth that is identified with characteristics like confidence and integrity and a demeanor described as dignified.

Dignity-in-relation refers to the ways in which respect and worth are conveyed through individual and collective behavior. It also encompasses the historical sense of dignity as adhering to status or rank. Expectations for what dignity should be and perceptions of when it is present or absent depend upon the mores and traditions of a particular community or society.

Because they are socially produced, both types of social dignity are also contingent: they can be measured, violated, or promoted. Although participants in the interview portions of this study were not asked to define dignity, in speaking of their experiences they often explored their own understandings of its meaning.

Their definitions-in-use closely mapped onto the concepts of human and social dignity discerned in the literature. For example, participants described the concept here called human dignity: "dignity is not a commodity Participants talked about human and social dignity in ways that begin to explain how the two forms of dignity might be related.

One participant described dignity-of-self as vulnerable to damage—" [people's dignity is] there, but they may not Every human interaction holds the potential to be a dignity encounter—an interaction in which dignity comes to the fore and may be either violated or promoted.

Such encounters involve individuals or collectives, actors whose intercourse is composed of layers of markers, gestures, interpretations, and responses. Dignity encounters take place in specific settings, public or private social and physical environments in which actors engage in certain customary patterns of behavior. For example, dignity encounters described by the interview participants unfolded in places like healthcare facilities, family homes, welfare offices, jails, classrooms, coffee shops, and urban sidewalks.

These settings, like the actors and their encounters, are embedded in a broader social order. The dignity dimension of an interaction is related to several sets of conditions: the positions of the individual or collective actors; characteristics of the relationship between the actors; features of the setting; and properties of the broader social order in which the setting, actors, and encounter are all situated. Figure 1 is a representation of these conditions.

Dignity encounters appear more likely to result in violation when one actor is in a position of vulnerability —for example, when the actor is sick, poor, weak, helpless, ashamed, or confused—and the other actor is in a position of antipathy —for example, the actor is prejudiced, arrogant, hostile, or impatient.

Violation is more common when the relationship between the actors is one of asymmetry ; that is, when one actor has more power, authority, knowledge, wealth, or strength than the other. Settings characterized by harsh circumstances are also more likely to see violation of dignity. Such settings are often described as hierarchical and rigid, full of distraction and stress and urgency, but lacking in resources.

Dignity violation is tied to an order of inequality , a social order in which inequities like those based in racism or sexism or economic disparity flourish. Dignity violation is portrayed graphically in Figure 2.

By contrast, dignity promotion becomes more likely when one actor in an encounter is in a position of confidence —has a sense of self-assurance and hope and feels deserving of good things—and the other in a position of compassion —is kind, open-minded, honest, and has good intentions.

Encounters are more likely to result in dignity promotion when the relationship between the actors is one of solidarity ; that is, when the relationship is characterized by qualities like reciprocity, rapport, empathy, and trust. Dignity promoting settings are those that feature humane circumstances —characteristics like accessibility, transparency, friendliness, beauty, and calm. Finally, dignity promotion is more likely to occur under an order of justice , a social order that sees the provision of adequate income and housing, access to education and healthcare, and other societal investment in public goods.

Dignity promotion is portrayed graphically in Figure 3. Participants' accounts suggested these are the ideal conditions for violation and promotion, but that in actuality their dignity encounters often take place in mixed conditions. That is, one may find settings meeting the description of humane circumstances even under broader orders of inequality or relationships characterized by solidarity even when one actor is in a position of vulnerability.

Thus, neither dignity violation nor dignity promotion requires the simultaneous presence of all of the conditions described. Conditions at one level can influence conditions at other levels, however. In an order of inequality, the relationship between actors in a given dignity encounter is more likely to be characterized by asymmetry and individual and collective actors more often find themselves in positions of vulnerability.

Conditions may be temporally related. Past dignity encounters help to establish the conditions for present and future encounters. An actor whose dignity has been violated in previous encounters is more likely to be in a position of vulnerability in a new encounter, for example.

The conditions described should be conceptualized as risk factors for dignity violation or promotion: their presence does not fully determine violation or promotion, but makes such outcomes more likely. In a dignity encounter, individual or collective actors engage in a cyclical interaction that involves reading each other's physical and social markers e. It is such social processes that violate dignity.

Analysis of participants' accounts found that the main social processes involved in their experiences of violation were:. Dismissal : Ignoring or discounting an actor's knowledge, skills, perceptions, concerns, needs, and feelings.

Diminishment : Making an actor feel smaller or lessened by the form and content of the interaction.

A taxonomy of dignity: a grounded theory study

Dignity in the 21st Century pp Cite as. What is dignity from a Western perspective? A taxonomy of dignity is developed and illustrated in a diagram. Why would something that is inviolable meaning secure from attack, assault or trespass need protection? Who is right? The Latin term dignitas itself is directly related to the Latin noun decus , which means ornament, distinction, honour or glory. The equivalent verb decet can be linked to the Greek term dokein , which means to show or to seem Lebech


thefloatingschoolid.org?seq=1&cid=pdf-reference#​references_tab_contents emotion; de Sousa's claim suggests that all the dramas of self- essays are reprinted in Dignity, Character, and Self-Respect. 8.


A taxonomy of dignity: a grounded theory study

She wrote it not to a word count or a line count, but to an exact character count. Once, in a dry season, I wrote in large letters across two pages of a notebook that innocence ends when one is stripped of the delusion that one likes oneself. Although now, some years later, I marvel that a mind on the outs with itself should have nonetheless made painstaking record of its every tremor, I recall with embarrassing clarity the flavor of those particular ashes.

Metrics details. This paper has its origins in Jonathan Mann's insight that the experience of dignity may explain the reciprocal relationships between health and human rights. It follows his call for a taxonomy of dignity: "a coherent vocabulary and framework to characterize dignity. Grounded theory procedures were use to analyze literature pertaining to dignity and to conduct and analyze 64 semi-structured interviews with persons marginalized by their health or social status, individuals who provide health or social services to these populations, and people working in the field of health and human rights.

Self-esteem is an individual's subjective evaluation of their own worth. Self-esteem encompasses beliefs about oneself for example, "I am unloved", "I am worthy" as well as emotional states, such as triumph, despair, pride, and shame. Self-esteem is an attractive psychological construct because it predicts certain outcomes, such as academic achievement, [3] [4] happiness, [5] satisfaction in marriage and relationships, [6] and criminal behavior. Psychologists usually regard self-esteem as an enduring personality characteristic trait self-esteem , though normal, short-term variations state self-esteem also exist.

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This paper has its origins in Jonathan Mann's insight that the experience of dignity may explain the reciprocal relationships between health and human rights. It follows his call for a taxonomy of dignity: "a coherent vocabulary and framework to characterize dignity. Grounded theory procedures were use to analyze literature pertaining to dignity and to conduct and analyze 64 semi-structured interviews with persons marginalized by their health or social status, individuals who provide health or social services to these populations, and people working in the field of health and human rights. The taxonomy presented identifies two main forms of dignity—human dignity and social dignity—and describes several elements of these forms, including the social processes that violate or promote them, the conditions under which such violations and promotions occur, the objects of violation and promotion, and the consequences of dignity violation. Together, these forms and elements point to a theory of dignity as a quality of individuals and collectives that is constituted through interaction and interpretation and structured by conditions pertaining to actors, relationships, settings, and the broader social order.

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A central virtue in the Younger household, dignity exerts a unifying force throughout the play. Although some characters, such as Mrs. Upon first meeting Lindner, Walter, Ruth , and Beneatha resoundingly reject his offer, demonstrating their collective familial pride. Mama: What is it you want to express? Beneatha: Me!

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