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In sickness and in dignity: A philosophical account of the meaning of dignity in health care
International Journal of Nursing Studies 61 (2016) 136–141
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In sickness and in dignity: A philosophical account of the meaning of dignity in health care Linda Barclay * Department of Philosophy, Monash University, Clayton Rd, Clayton, Victoria, Australia
A R T I C L E I N F O
A B S T R A C T
Article history: Received 22 March 2016 Received in revised form 9 June 2016 Accepted 17 June 2016
The meaning of dignity in health care has been primarily explored using interviews and surveys with various patient groups, as well as with health care practitioners. Philosophical analysis of dignity is largely avoided, as the existing philosophical literature is complex, multifaceted and of unclear relevance to health care settings. The aim of this paper is to develop a straightforward philosophical concept of dignity which is then applied to existing qualitative research. In health care settings, a patient has dignity when he or she is able to live in accordance with his or her standards and values. Accordingly, health care 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 standards and values. This concept is shown to explain and illuminate most of the key qualitative findings. It therefore provides a more coherent and synthesised concept of dignity in health care. Crown Copyright ß 2016 Published by Elsevier Ltd. All rights reserved.
Keywords: Dignity Philosophical analysis Standards and values The Dignity Model
What is already known about the topic 1. Introduction Treating patients with dignity is an increasing priority in health care policy and practice. Clarifying the meaning of dignity in health care is largely explored using qualitative interviews with various patient groups.
What this paper adds This paper develops a philosophical concept of dignity. This concept of dignity is applied to existing qualitative research to clarify and synthesise the disparate factors that patients have identified as related to dignity.
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The importance of dignity as a value in health care is widely recognised. It is discussed extensively in palliative care, nursing, and more broadly as part of patient-centred care (Chochinov, 2012; Franklin et al., 2006; Kitson et al., 2013; Pringle et al., 2015). The requirement to protect dignity is of limited practical guidance without a clear understanding of what is meant by ‘dignity’. Despite the burgeoning literature on dignity in health care, there is no consensus on what ‘dignity’ means, as has been frequently noted (Pringle et al., 2015; Seedhouse and Gallagher, 2002; Walsh and Kowanko, 2002: 30). What the existing literature mainly provides is rich qualitative data based on responses of various patient groups or health care practitioners. What emerges from these studies are lists or categories of factors that informants identify as either promoting or undermining dignity. While this body of
http://dx.doi.org/10.1016/j.ijnurstu.2016.06.010 0020-7489/Crown Copyright ß 2016 Published by Elsevier Ltd. All rights reserved.
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research significantly advances understanding of how to promote dignity, it remains somewhat incomplete in two key respects. Firstly, while lists or categories of items offer real progress, a synthesised concept has the potential to provide a much simpler and more direct clarification of what dignity means, not only in one domain, such as palliative care, but across the whole health care sector. This offers the further possibility of concrete guidance for both broader health care practice and policy development. A less ‘deconstructed’ account of dignity can be more useful than complex lists and multiple categories. Secondly, the qualitative methodology favoured in most existing literature on dignity is to ask patients and health care practitioners directly to specify what they consider to be dignified care (Anderberg et al., 2007; Chochinov, 2002, 2012; Chochinov et al., 2002; Enes, 2003; Franklin et al., 2006; Joffe et al., 2003; Seedhouse and Gallagher, 2002; Woolhead et al., 2004). While patients’ and practitioners’ views about dignity are important in developing any account of dignified care, there are limitations to this methodology. Given that patients and practitioners are no more likely to have a clear understanding of what ‘dignity’ means than do researchers, asking them to report directly on their perceptions of dignified or undignified care runs the risk of collapsing the concept of dignity into the same category as ‘high quality health care’ or ‘high quality palliative care’, or simply, ‘a good death’. However, if a dignified death is nothing other than a good death, or if dignified health care is nothing other than good quality health care, then ‘dignity’ really is ‘‘a useless concept’’, as Ruth Macklin has forcefully argued (Macklin, 2003). It adds nothing new: it is just a fashionable new term for existing values, such as autonomy, compassion, privacy, respect, safety, and the like. For these reasons, it is perilous to jettison more philosophical or theoretical analysis and clarification of the concept of dignity. Some qualitative research does incorporate philosophical analysis (Anderberg et al., 2007; Gallagher et al., 2008). However this too can be a vexed task. Much of what philosophers have historically said about dignity is abstract and extremely difficult to apply to the concrete setting of health care. Moreover, philosophers are often not discussing the same concept that is at stake in health care. ‘Dignity’ is a vague term, and has been used within the history of philosophical thought to refer to quite distinct concepts (Nordenfelt, 2004; Schroeder, 2008). The issue is not simply that the concept of dignity is contested: it is multifaceted. Indeed, much of this philosophical material is quite tangential to the values at stake in health care settings. What is needed is the identification of a core philosophical concept of dignity that clarifies and synthesises the disparate qualitative findings. 2. Dignity, status and standards Philosophical analysis clearly demonstrates that dignity does add something unique and important to our ethical vocabulary. It is not a useless concept, and is especially important in health care contexts. Within the complex philosophical terrain there is a core, and quite simple,
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concept of dignity that offers great promise for deepening our understanding of dignity in health care. In health care settings, a patient has dignity when he or she is able to live in accordance with his or her standards and values. Accordingly, health care 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 standards and values (Killmister, 2010). It is a uniquely human capacity to be able to shape a life in accordance with principles or standards, and thereby fill out each life with its own meaning and purpose. A large part of what it means to respect human beings, to treat them as equals, is just to respect their capacity to live according to values and principles that provide their lives with meaning and anchor their self-worth (Killmister, 2010). These standards and values need not be particularly lofty, although they include our moral codes and perhaps religious commitments. They also include things like our cultural mores, our sense of etiquette and other beliefs we may hold about proper conduct and interpersonal interaction, including apparently trivial matters such as politeness and correct forms of address (Killmister, 2010). The ability to realise one’s values and standards can be jeopardised by a range of circumstances, including the behaviour of others, the physical setting, one’s own actions, and deteriorating health. It is clearly vulnerable in situations of sickness and dependency where an individual’s ability to control how well he or she can uphold his or her standards may be very limited and heavily dependent on others. Not being able to live up to one’s standards and values is often experienced as shameful and humiliating: we feel lowered in the eyes of others. David Luban demonstrates the intimate link between dignity and humiliation with the example of torture (Luban, 2009). As evidence from Abu Ghraib shows, many forms of torture were inflicted on prisoners by members of the U.S. military with the sole aim to humiliate them: ‘‘Terror makes us whimper and beg; it makes us lose control of our bowel and bladder. The Abu Ghraib dog-handlers had contests to see who could make a detainee foul himself first’’ (Luban, 2009: 223). According to Luban, the terror associated with the infliction of physical pain in torture also has a special connection to humiliation. He says that ‘‘the experience of acute pain is itself degrading because it collapses our world and reduces us to mere prisoners of our bodies. Pain forcibly severs our focus on anything outside of us; it shrinks our horizon to our own body’’ (Luban, 2009: 223). Torture makes it virtually impossible to maintain our own standards or uphold what we regard as worthy interpersonal conduct, which is why it humiliates so, just as it is designed to do (Luban, 2009). This is central to understanding why international law identifies torture as a particularly egregious threat to human dignity. Undignified health care is not the same as torture. Nevertheless, there are some similarities in nature, if not degree. According to Suzy Killmister, at least for some of us, ‘‘part of the trauma of undergoing medical procedures is the shame we experience in having our bodies exposed, the
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public nature of otherwise deeply private bodily functions, and the childlike 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’’ (Killmister, 2010: 162). Similar things could be said of mixed-sex wards, a longer standing issue in the UK, also addressed under the concept of ‘dignity’ (Baillie, 2009; Gallagher and Seedhouse, 2002; Woolhead et al., 2004). Most people strive to maintain even higher standards of privacy and discreetness in their interactions with the opposite sex, standards they are forced to abandon when sharing a cramped room and bathroom, dressed only in night wear, and engaged in highly personal interactions with health care staff (Gallagher and Seedhouse, 2002). This concept of dignity is closely connected to esteem and status. Consider some of the categories of dignity identified by Doris Schroeder and Lennart Nordenfelt in their frequently cited articles (Nordenfelt, 2004; Schroeder, 2008). Aristocratic dignity as identified by Schroder is the dignity of those of a certain type of higher status or privilege, which is similar to what Nordenfelt, somewhat misleadingly, refers to as meritocratic dignity. Moral dignity, identified by both Nordenfelt and Schroeder, refers to the elevated status of those with high moral standards, or who live by those standards even under extreme pressure. Comportment dignity is the conferring of status-based esteem on those who abide by social and cultural norms of proper conduct. Each of these examples suggests specific ways in which some people can attain higher status or esteem than others. Historically dignity has been associated with conferring status or esteem only on some small number. In the modern era dignity is now deeply entwined with the increasing recognition of the equal worth of all human beings and is thus more frequently invoked to connote equal status (Waldron, 2012). Kantian dignity is the bestknown example, where each and every rational person has equivalent, and inviolable, worth (Schroeder, 2008). As Robert Simpson expresses it, ‘‘contemporary understanding of dignity demands that honour and esteem be portioned out to all in equal measure, insofar as we all occupy an equivalent rank, as members of a shared moral community. An infringement of person A’s dignity, for us, does not mean failing to treat A in accordance with the demands of a caste system. On the contrary, it means treating A as though she does belong in a caste system, and thus failing to treat her as a fully-entitled person or member of society’’ (Simpson, 2013: 708–9). Nowhere is this modern commitment to equal status more clearly expressed than in international human rights law. There are potentially innumerable ways that patients can feel that their equal status is undermined. A medical practitioner who fails to address the patient directly, or even meet his eye, signals his lower status. I would suggest that allowing 10 students to conduct rectal examinations on a frail and bewildered patient purely for training purposes is starkly at odds with respecting that patient as one’s equal (Chochinov, 2012: 18). But the equal status of a
patient is also not respected when others make it impossible for him to maintain the standards and values that he takes to exemplify worthy conduct. Such behaviour signals to the patient that he is not respected as an equal, a person who, like others, has standards and values which infuse his life with meaning and worth. Many difficult ethical questions remain. Philosophers will be interested to what extent our standards and values are purely personal, or largely shared social standards. Are they subjective or objective? We are forced to confront these questions in cases such as ‘dwarf throwing’, where the person being thrown suffers no humiliation but others regard his treatment as degrading, a violation of his equal status (Rosen, 2012). Similarly, we need to consider if we are required to respect a person’s personal standards if they are obnoxious, such as a patient who regards it as humiliating to be treated by a clinician from an ethnic minority. Even the exigencies of health care resources can raise questions about the imperative to respect dignity. An older woman might consider it a lack of respect when nursing staff serves her tea without a saucer (Seedhouse and Gallagher, 2002: 39). The ethical question arises as to whether treating a patient in accordance with her own standards and values in this case outweighs considerations of resource allocation, including the time of busy nursing staff. Respecting a person’s standards and values will not necessarily trump other considerations. Conflict between values is standard fare in philosophical discussion: there is no reason to suppose it would not also arise on occasion between dignity and other values in the complex environment of health care.
3. Dignity in health care Despite all of these ethical complexities, the concept of dignity is considerably less ‘deconstructed’ than much of the existing health care literature would indicate. We can make more coherent sense of the often long lists of disparate items that are said to constitute dignified treatment, or items that are said to undermine it. To treat a person with respect for his or her dignity means to respect his or her capacity to uphold standards and values, and thereby avoid humiliating and shaming. Respecting the patient’s ability to realise his or her standards and values is fundamental to respecting his or her equal status as a person for whom the ability to live in accordance with standards and values is vitally important. Many concrete behaviours, institutional practices, built environments, and interpersonal interactions can threaten a person’s ability to uphold her values and standards, particularly in contexts of vulnerability. Existing qualitative research highlights many of these concrete threats. Consider the ‘Dignity Model’ of palliative care, developed by Harvey Max Chochinov and his colleagues based on interviews and surveys with terminally ill patients (Chochinov, 2012; Chochinov et al., 2008). There are three categories within the model – illness related concerns, the dignity conserving repertoire and the social dignity inventory – based on patients’ identification of factors impacting their dignity. Under each category is a
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longer list of more concrete behaviours, circumstances and physical and psychological states. Most of the items on the Dignity Model are encapsulated by the notion of dignity because they closely relate to the individual’s capacity to uphold their standards and values during the dying process. For example, the model identifies a person’s level of independence and symptom control as affecting their sense of dignity (Chochinov, 2012). High levels of dependence, especially with washing, toileting and eating, are at odds with the standards and values that most people embrace throughout their adult lives (Enes, 2003; Oosterveld-Vlug et al., 2014; van Gennip et al., 2013a,b). It is unsurprising that younger patients identify this issue as particularly threatening to their dignity: such dependence is especially at odds with commonly shared standards of independence assumed for younger people, and also because many younger patients will not have experienced a slower progression into dependency with the potential for adaptation and the acceptance of alternative standards and values (Chochinov, 2012). Poor symptom control such as loss of bowel function, vomiting, and severe pain also make it extremely difficult to continue to live and interact with others in a manner that most people strive to (Chochinov, 2012; Guo and Jacelon, 2014). These effects on how patients live out the rest of their lives and interact with others can shame and embarrass them, erode their perceived standing in the eyes of others, and undermine their self-worth. The threat to dignity is obviously not the only thing bad about pain. As philosophers would put it, pain can also just be bad in itself, or intrinsically bad. Indeed, for many of the items on the Dignity Model there can be many different reasons for why patients identify them as important: pain may be bad for one patient for a number of reasons, and bad for a number of different patients for different reasons. But when people identify uncontrolled pain also as a specific threat to their dignity, they highlight how it can destroy the ability to be, and interact as, the person they consider worthy. Other items on the Dignity Model have an even more direct link to the ability to live by one’s standards and values and thereby maintain one’s sense of equal worth. Continuity of self, role preservation, maintenance of pride, maintaining normalcy, burden to others and privacy boundaries, all relate directly to maintaining one’s standards and values: those that shape one’s identity, infuse one’s roles (as parent, lawyer, nurse, homemaker) with meaning and worth, and determine how one wishes to interact with others, with what degree of discreetness, dependency and so on (Chochinov, 2012). Consider: a dying patient is unlikely to be distressed by his inability to continue actively to father his children unless he believes his fathering activities are valuable, just as another patient will not suffer from no longer being able to pursue her career unless she believes that career is of meaning and value. When dying people identify the loss of all of these things as connected to diminishing dignity, they are identifying the loss of the standards and values that have shaped their lives. Chochinov notes the ‘‘intriguing’’ association between preoccupation with personal appearance and fractured dignity (Baillie, 2009; Chochinov, 2012; Enes, 2003;
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Gallagher et al., 2008; Oosterveld-Vlug et al., 2014). But care over personal appearance and the image thereby projected to others is one of the most basic standards that influences our daily conduct (Killmister, 2010). This is not the exclusive domain of the fashionista: most of us wish to present to others as at the very least clean and tidy. Most of us feel deeply that the inability to present with such minimal standards to others lowers our standing in their eyes. This is experienced as shameful and humiliating. Equally important is the care tenor, that is, the manner in which health care practitioners and other staff interact with patients (Chochinov, 2012; Enes, 2003; Gallagher et al., 2008; Oosterveld-Vlug et al., 2014; Seedhouse and Gallagher, 2002; van Gennip et al., 2013a,b). As was mentioned earlier, staff can signal quite explicitly that they do not hold a patient in high regard. Staff who talk to a patient as though she is a child (Dickert and Ne, 2009; Woolhead et al., 2004), or fail to provide minimal degrees of privacy (Baillie, 2009; Gallagher et al., 2008; Guo and Jacelon, 2014; Walsh and Kowanko, 2002), or are hurried and behave as though they are inconvenienced (Enes, 2003; Guo and Jacelon, 2014; Walsh and Kowanko, 2002), signal to the patient that she is not important, and that her ongoing capacity to live in a manner she, and most others, consider worthy is to them of little significance. Intentionally or not, such behaviour sends unequivocal signals about the esteem in which the patient is held, whether he or she is respected as someone worthy of living their life according to standards and values which, in many of these cases, are shared by most of us. The most recent systematic review provides further support for this conceptual framework by identifying symptom control, privacy and staff behaviour as the most common themes in dignity research (Pringle et al., 2015). The issue of ‘individuality’ or being treated as an individual also recurs frequently in dignity research, as patients, particularly those in institutions, rail against being stripped of their status as unique individuals with their own standards and values (Anderberg et al., 2007; Walsh and Kowanko, 2002; Woolhead et al., 2004). Don Berwick movingly captures its importance in his famous defence of patient-centred care: What chills my bones is indignity. It is the loss of influence on what happens to me. It is the image of myself in a hospital gown, homogenized, anonymous, powerless, no longer myself. It is the sound of a young nurse calling me, ‘‘Donald,’’ which is a name I never use— it’s ‘‘Don,’’ or, for him or her, ‘‘Dr. Berwick.’’. . . That’s what scares me: to be made helpless before my time, to be made ignorant when I want to know, to be made to sit when I wish to stand, to be alone when I need to hold my wife’s hand, to eat what I do not wish to eat, to be named what I do not wish to be named, to be told when I wish to be asked, to be awoken when I wish to sleep. Call it patient-centeredness, but, I suggest, this is the core: it is that property of care that welcomes me to assert my humanity and my individuality (Berwick, 2009: 564) The Dignity Model and other dignity research also identifies autonomy and control as associated with dignity. Autonomy and control have dual importance to dignity.
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Firstly, they are in themselves personal attributes widely valued by most people, and a particular source of our status as equals. To be able to take care of oneself and direct one’s own life is a part of most people’s values to some degree. Secondly, autonomy and control are important factors that influence whether individuals can maintain the ability to continue to live according to their other standards and values (Chochinov, 2012; Guo and Jacelon, 2014; Woolhead et al., 2004). People who have little control over their environment or diminishing mastery over their own minds or bodies, are heavily dependent on others to ensure their standards and values are maintained. Dignity is thus closely entwined with the concept of autonomy, but it is not synonymous with it (Killmister, 2010; Schroeder, 2008). Autonomy is about one’s level of control and choice. In health care contexts it is particularly connected to the issue of informed consent and the right to accept or decline treatment. Respecting a person’s dignity includes respect for that person’s choices, but dignity is a broader value that is important even when choice is not particularly relevant. Many patients move beyond the point where they are able to exercise clear choice, yet it remains imperative to respect the standards and values that have given their life meaning. It is no less an assault on dignity to leave a person with severe dementia exposed on the toilet than it is to leave a young person in such a situation. It is not the patient’s autonomy or informed consent that is violated in a case like this; it is their dignity. There are also many circumstances where even for fully capable patients the issue of choice is secondary. For example, it might well be at odds with a person’s preferences when health care staff call her ‘pet’ or ‘dear’, or when they fail to close the curtain when performing medical procedures, or when they show no interest in helping her to maintain a clean and neat appearance. But the real insult is not simply that such behaviour is at odds with the patient’s choice: it is that it shows a profound disregard for the patient as an individual with her own standards and values who is humiliated when she is forced to transgress them. The conceptual framework sheds light on why dignity research is especially focused on the dying (Allmark, 2002; Chochinov, 2012; Chochinov et al., 2002; Enes, 2003; Guo and Jacelon, 2014; Pringle et al., 2015) the old (Anderberg et al., 2007; Franklin et al., 2006; Gallagher et al., 2008; Hall et al., 2009; Seedhouse and Gallagher, 2002; Woolhead et al., 2004) and those hospitalized (Baillie, 2009; Joffe et al., 2003; Matiti and Trorey, 2004). Because of their frailty, and often limited control over their environments, all such groups of people are especially vulnerable to being unable to continue to live in accordance with their standards and values and thus in a manner where their sense of self worth is maintained. Add to this cultural practices that can disrespect older people and treat them like small children, and conditions are especially ripe for failure to respect dignity. People who are dying also raise interesting dignity issues, in addition to those just mentioned. Most people want to be remembered for who they have been, who they have understood themselves to be, throughout their lives: ‘‘Most of us see death. . .as the final act of life’s drama, and we want that
last act to reflect our own convictions, those we have tried to live by, not the convictions of others forced on us in our most vulnerable moment’’ (Dworkin et al., 1997). 4. Dignity is not synonymous with ‘good quality health care’ or ‘a good death’ Not everything that health care researchers have identified as part of dignity will be convincingly captured by the concept of dignity developed here. For example, The Dignity Model identifies ‘‘resilience or fighting spirit’’ and ‘‘living in the moment’’ as associated with the sense of dignity (Chochinov et al., 2012). It is always possible to tell a story that these attributes are part of, or help bolster, a person’s values and standards. However, it is likely that they are instead more important simply to other aspects of psychological well-being, such as avoiding distress. Other examples of tenuous connection to dignity include the identification of a ‘‘safe and calm environment’’ as part of dignified end-of-life care (Guo and Jacelon, 2014). While environmental features can profoundly impact a person’s ability to live, and die, in accordance with his or her standards, a safe environment is surely just an independent feature of good quality health care rather than a constituent of dignity more specifically. These examples do not cast serious doubt on the plausibility of the proposed concept of dignity. It was argued earlier that if dignity is not just a fashionable new term for ‘a good death’ or ‘good quality health care’, then it is imperative to reach an understanding of what is specific about dignity that is not captured by other health care values, such as safety, autonomy, compassion and the like. Yet some existing literature does indeed appear to analyse dignity in terms of the broader notion of good health care, including good palliative care or, simply, a ‘good death’. For example, in a recent systematic review of dignity and patient-centred care, over half of the existing literature cited addresses the quality of health care, or of patients’ experience of health care, rather than addressing dignity more specifically (Pringle et al., 2015). This is not an uncommon trend within other literature. Even Chichinov’s Dignity Model, which has done more than any other research to zone in closely on dignity, often reverts to broader discussion of patient ‘‘distress’’ or patient ‘‘satisfaction’’. Van Gennip and her colleagues claim that for the majority of people ‘‘a good death’’ is simply synonymous with ‘‘a dignified death’’ (van Gennip et al., 2013a,b). Respecting patients’ dignity is part of good quality health care but is not synonymous with it, just as it is a part of, not synonymous with, a good death. In addition to values such as safety, compassion, and autonomy, respecting dignity is an additional, unique value: it refers to upholding the patient’s standing as an equal, especially by respecting her capacity to live in accordance with her standards and values. Conceptual analysis will not on its own be sufficient to provide a detailed description of the concrete requirements of dignified care in practice. It will be an ongoing matter for those directly involved in each patient’s care to determine what aspects of care may clash with his or her standards and values and undermine his or her self worth. What this
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conceptual analysis does offer is clarification on dignity as a unique value, and an understanding of its importance in health care contexts. It therefore also provides a degree of synthesis of what has remained a relatively deconstructed notion in health care literature and policy. 5. Conclusion Dignity is not a useless concept. Dignity is of special importance in health care, as our own failing bodies, our vulnerability, as well as loss of control over the environment, can all significantly impact the ability to uphold the standards and values central to our lives. Being treated with dignity adds something crucial to good health care, beyond high quality medical care, being treated as an autonomous agent, and being treated with compassion. It signals that each and every one of us is equally worthy, capable of the unique human ability to shape a life according to a set of standards and values which infuse that life with meaning. This conceptual clarification identifies the unique harm that is inflicted on people when we fail to respect their dignity, namely, humiliation and the loss of self worth, and an implicit allocation to an inferior rank. References Allmark, P., 2002. Death with dignity. J. Med. Ethics 28 (4), 255–257. Anderberg, P., Lepp, M., Berglund, A.L., Segesten, K., 2007. Preserving dignity in caring for older adults: a concept analysis. J. Adv. Nurs. 59 (6), 635–643. Baillie, L., 2009. Patient dignity in an acute hospital setting: a case study. Int. J. Nurs. Stud. 46 (1), 23–36. Berwick, D.M., 2009. What ‘patient-centered’ should mean: confessions of an extremist. Health Aff. (Millwood) 28 (4), w555–w565. Chochinov, H.M., 2012. Dignity Therapy. Final Words for Final Days. Oxford University Press, New York. Chochinov, H.M., 2002. Dignity-conserving care – a new model for palliative care: helping the patient feel valued. JAMA 287 (17), 2253–2260. Chochinov, H.M., Cann, B., Cullihall, K., Kristjanson, L., Harlos, M., McClement, S.E., Hack, T.F., Hassard, T., 2012. Dignity therapy: a feasibility study of elders in long-term care. Palliat. Support. Care 10 (1), 3–15. Chochinov, H.M., Hack, T., McClement, S., Kristjanson, L., Harlos, M., 2002. Dignity in the terminally ill: a developing empirical model. Soc. Sci. Med. 54 (3), 433–443. Chochinov, H.M., Hassard, T., McClement, S., Hack, T., Kristjanson, L.J., Harlos, M., Sinclair, S., Murray, A., 2008. The patient dignity inventory: a novel way of measuring dignity-related distress in palliative care. J. Pain Symptom Manag. 36 (6), 559–571. Dickert, N.W., Kass, N.E., 2009. Understanding respect: learning from patients. J. Med. Ethics 35 (2), 419–423. Dworkin, R., Nagel, T., Nozick, R., Rawls, J., Scanlon, T., Jarvis Thomson, J., 1997. Assisted suicide: the philosophers’ briefIn: New York Times Book Review.
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Enes, S., 2003. An exploration of dignity in palliative care. Palliat. Med. 17, 263–269. Franklin, L.L., Ternestedt, B.M., Nordenfelt, L., 2006. Views on dignity of elderly nursing home residents. Nurs. Ethics 13 (2), 130–146. Gallagher, A., Li, S., Wainwright, P., Jones, I.R., Lee, D., 2008. Dignity in the care of older people – a review of the theoretical and empirical literature. BMC Nurs. 7, 11. Gallagher, A., Seedhouse, D., 2002. Dignity in care: the views of patients and relatives. Nurs. Times 98 (43), 39–40. Guo, Q., Jacelon, C.S., 2014. An integrative review of dignity in end-of-life care. Palliat. Med. 28 (7), 931–940. Hall, S., Longhurst, S., Higginson, I., 2009. Living and dying with dignity: a qualitative study of the views of older people in nursing homes. Age Ageing 38 (4), 411–416. Joffe, S., Manocchia, M., Weeks, J.C., Cleary, P.D., 2003. What do patients value in their hospital care? An empirical perspective on autonomy centred bioethics. J. Med. Ethics 29, 103–108. Killmister, S., 2010. Dignity: not such a useless concept. J. Med. Ethics 36, 160–164. Kitson, A., Marshall, A., Bassett, K., Zeitz, K., 2013. What are the core elements of patient-centred care? A narrative review and synthesis of the literature from health policy, medicine and nursing. J. Adv. Nurs. 69 (1), 4–15. Luban, D., 2009. Human dignity, humiliation, and torture. Kennedy Inst. Ethic J. 19 (3), 211–230. Macklin, R., 2003. Dignity is a useless concept. BMJ 327 (7429), 1419–1420. Matiti, M.R., Trorey, G., 2004. Perceptual adjustment levels: patients’ perception of their dignity in the hospital setting. Int. J. Nurs. Stud. 41 (7), 735–744. Nordenfelt, L., 2004. The varieties of dignity. Health Care Anal. 12 (2), 69–81, [discussion 83–89]. Oosterveld-Vlug, M.G., Pasman, H.R., van Gennip, I.E., Muller, M.T., Willems, D.L., Onwuteaka-Philipsen, B.D., 2014. Dignity and the factors that influence it according to nursing home residents: a qualitative interview study. J. Adv. Nurs. 70 (1), 97–106. Pringle, J., Johnston, B., Buchanan, D., 2015. Dignity and patient-centred care for people with palliative care needs in the acute hospital setting: a systematic review. Palliat. Med. 29 (8), 675–694. Rosen, M., 2012. Dignity. Its History and Meaning. Harvard University Press, Cambridge, Masachusetts. Schroeder, D., 2008. Dignity: two riddles and four concepts. Camb. Q. Healthc. Ethics 17 (2), 230–238. Seedhouse, D., Gallagher, A., 2002. Undignifying institutions. J. Med. Ethics 28 (6), 368–372. Simpson, R., 2013. Mark, dignity, harm and hate speech. Law Philos. 32, 701–728. van Gennip, I.E., Pasman, H.R., Kaspers, P.J., Oosterveld-Vlug, M.G., Willems, D.L., Deeg, D.J., Onwuteaka-Philipsen, B.D., 2013a. Death with dignity from the perspective of the surviving family: a survey study among family caregivers of deceased older adults. Palliat. Med. 27 (7), 616–624. van Gennip, I.E., Pasman, H.R., Oosterveld-Vlug, M.G., Willems, D.L., Onwuteaka-Philipsen, B.D., 2013b. The development of a model of dignity in illness based on qualitative interviews with seriously ill patients. Int. J. Nurs. Stud. 50 (8), 1080–1089. Waldron, J., 2012. Dignity, Rank and Rights. Oxford University Press, New York. Walsh, K., Kowanko, I., 2002. Nurses’ and patients’ perceptions of dignity. Int. J. Nurs. Pract. 8 (3), 143–151. Woolhead, G., Calnan, M., Dieppe, P., Tadd, W., 2004. Dignity in older age: what do older people in the United Kingdom think? Age Ageing 33 (2), 165–170.
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International Journal of Nursing Studies journal homepage: www.elsevier.com/ijns
In sickness and in dignity: A philosophical account of the meaning of dignity in health care Linda Barclay * Department of Philosophy, Monash University, Clayton Rd, Clayton, Victoria, Australia
A R T I C L E I N F O
A B S T R A C T
Article history: Received 22 March 2016 Received in revised form 9 June 2016 Accepted 17 June 2016
The meaning of dignity in health care has been primarily explored using interviews and surveys with various patient groups, as well as with health care practitioners. Philosophical analysis of dignity is largely avoided, as the existing philosophical literature is complex, multifaceted and of unclear relevance to health care settings. The aim of this paper is to develop a straightforward philosophical concept of dignity which is then applied to existing qualitative research. In health care settings, a patient has dignity when he or she is able to live in accordance with his or her standards and values. Accordingly, health care 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 standards and values. This concept is shown to explain and illuminate most of the key qualitative findings. It therefore provides a more coherent and synthesised concept of dignity in health care. Crown Copyright ß 2016 Published by Elsevier Ltd. All rights reserved.
Keywords: Dignity Philosophical analysis Standards and values The Dignity Model
What is already known about the topic 1. Introduction Treating patients with dignity is an increasing priority in health care policy and practice. Clarifying the meaning of dignity in health care is largely explored using qualitative interviews with various patient groups.
What this paper adds This paper develops a philosophical concept of dignity. This concept of dignity is applied to existing qualitative research to clarify and synthesise the disparate factors that patients have identified as related to dignity.
* Tel.: +61 3 99054278. E-mail address: [email protected]
The importance of dignity as a value in health care is widely recognised. It is discussed extensively in palliative care, nursing, and more broadly as part of patient-centred care (Chochinov, 2012; Franklin et al., 2006; Kitson et al., 2013; Pringle et al., 2015). The requirement to protect dignity is of limited practical guidance without a clear understanding of what is meant by ‘dignity’. Despite the burgeoning literature on dignity in health care, there is no consensus on what ‘dignity’ means, as has been frequently noted (Pringle et al., 2015; Seedhouse and Gallagher, 2002; Walsh and Kowanko, 2002: 30). What the existing literature mainly provides is rich qualitative data based on responses of various patient groups or health care practitioners. What emerges from these studies are lists or categories of factors that informants identify as either promoting or undermining dignity. While this body of
http://dx.doi.org/10.1016/j.ijnurstu.2016.06.010 0020-7489/Crown Copyright ß 2016 Published by Elsevier Ltd. All rights reserved.
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research significantly advances understanding of how to promote dignity, it remains somewhat incomplete in two key respects. Firstly, while lists or categories of items offer real progress, a synthesised concept has the potential to provide a much simpler and more direct clarification of what dignity means, not only in one domain, such as palliative care, but across the whole health care sector. This offers the further possibility of concrete guidance for both broader health care practice and policy development. A less ‘deconstructed’ account of dignity can be more useful than complex lists and multiple categories. Secondly, the qualitative methodology favoured in most existing literature on dignity is to ask patients and health care practitioners directly to specify what they consider to be dignified care (Anderberg et al., 2007; Chochinov, 2002, 2012; Chochinov et al., 2002; Enes, 2003; Franklin et al., 2006; Joffe et al., 2003; Seedhouse and Gallagher, 2002; Woolhead et al., 2004). While patients’ and practitioners’ views about dignity are important in developing any account of dignified care, there are limitations to this methodology. Given that patients and practitioners are no more likely to have a clear understanding of what ‘dignity’ means than do researchers, asking them to report directly on their perceptions of dignified or undignified care runs the risk of collapsing the concept of dignity into the same category as ‘high quality health care’ or ‘high quality palliative care’, or simply, ‘a good death’. However, if a dignified death is nothing other than a good death, or if dignified health care is nothing other than good quality health care, then ‘dignity’ really is ‘‘a useless concept’’, as Ruth Macklin has forcefully argued (Macklin, 2003). It adds nothing new: it is just a fashionable new term for existing values, such as autonomy, compassion, privacy, respect, safety, and the like. For these reasons, it is perilous to jettison more philosophical or theoretical analysis and clarification of the concept of dignity. Some qualitative research does incorporate philosophical analysis (Anderberg et al., 2007; Gallagher et al., 2008). However this too can be a vexed task. Much of what philosophers have historically said about dignity is abstract and extremely difficult to apply to the concrete setting of health care. Moreover, philosophers are often not discussing the same concept that is at stake in health care. ‘Dignity’ is a vague term, and has been used within the history of philosophical thought to refer to quite distinct concepts (Nordenfelt, 2004; Schroeder, 2008). The issue is not simply that the concept of dignity is contested: it is multifaceted. Indeed, much of this philosophical material is quite tangential to the values at stake in health care settings. What is needed is the identification of a core philosophical concept of dignity that clarifies and synthesises the disparate qualitative findings. 2. Dignity, status and standards Philosophical analysis clearly demonstrates that dignity does add something unique and important to our ethical vocabulary. It is not a useless concept, and is especially important in health care contexts. Within the complex philosophical terrain there is a core, and quite simple,
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concept of dignity that offers great promise for deepening our understanding of dignity in health care. In health care settings, a patient has dignity when he or she is able to live in accordance with his or her standards and values. Accordingly, health care 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 standards and values (Killmister, 2010). It is a uniquely human capacity to be able to shape a life in accordance with principles or standards, and thereby fill out each life with its own meaning and purpose. A large part of what it means to respect human beings, to treat them as equals, is just to respect their capacity to live according to values and principles that provide their lives with meaning and anchor their self-worth (Killmister, 2010). These standards and values need not be particularly lofty, although they include our moral codes and perhaps religious commitments. They also include things like our cultural mores, our sense of etiquette and other beliefs we may hold about proper conduct and interpersonal interaction, including apparently trivial matters such as politeness and correct forms of address (Killmister, 2010). The ability to realise one’s values and standards can be jeopardised by a range of circumstances, including the behaviour of others, the physical setting, one’s own actions, and deteriorating health. It is clearly vulnerable in situations of sickness and dependency where an individual’s ability to control how well he or she can uphold his or her standards may be very limited and heavily dependent on others. Not being able to live up to one’s standards and values is often experienced as shameful and humiliating: we feel lowered in the eyes of others. David Luban demonstrates the intimate link between dignity and humiliation with the example of torture (Luban, 2009). As evidence from Abu Ghraib shows, many forms of torture were inflicted on prisoners by members of the U.S. military with the sole aim to humiliate them: ‘‘Terror makes us whimper and beg; it makes us lose control of our bowel and bladder. The Abu Ghraib dog-handlers had contests to see who could make a detainee foul himself first’’ (Luban, 2009: 223). According to Luban, the terror associated with the infliction of physical pain in torture also has a special connection to humiliation. He says that ‘‘the experience of acute pain is itself degrading because it collapses our world and reduces us to mere prisoners of our bodies. Pain forcibly severs our focus on anything outside of us; it shrinks our horizon to our own body’’ (Luban, 2009: 223). Torture makes it virtually impossible to maintain our own standards or uphold what we regard as worthy interpersonal conduct, which is why it humiliates so, just as it is designed to do (Luban, 2009). This is central to understanding why international law identifies torture as a particularly egregious threat to human dignity. Undignified health care is not the same as torture. Nevertheless, there are some similarities in nature, if not degree. According to Suzy Killmister, at least for some of us, ‘‘part of the trauma of undergoing medical procedures is the shame we experience in having our bodies exposed, the
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public nature of otherwise deeply private bodily functions, and the childlike 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’’ (Killmister, 2010: 162). Similar things could be said of mixed-sex wards, a longer standing issue in the UK, also addressed under the concept of ‘dignity’ (Baillie, 2009; Gallagher and Seedhouse, 2002; Woolhead et al., 2004). Most people strive to maintain even higher standards of privacy and discreetness in their interactions with the opposite sex, standards they are forced to abandon when sharing a cramped room and bathroom, dressed only in night wear, and engaged in highly personal interactions with health care staff (Gallagher and Seedhouse, 2002). This concept of dignity is closely connected to esteem and status. Consider some of the categories of dignity identified by Doris Schroeder and Lennart Nordenfelt in their frequently cited articles (Nordenfelt, 2004; Schroeder, 2008). Aristocratic dignity as identified by Schroder is the dignity of those of a certain type of higher status or privilege, which is similar to what Nordenfelt, somewhat misleadingly, refers to as meritocratic dignity. Moral dignity, identified by both Nordenfelt and Schroeder, refers to the elevated status of those with high moral standards, or who live by those standards even under extreme pressure. Comportment dignity is the conferring of status-based esteem on those who abide by social and cultural norms of proper conduct. Each of these examples suggests specific ways in which some people can attain higher status or esteem than others. Historically dignity has been associated with conferring status or esteem only on some small number. In the modern era dignity is now deeply entwined with the increasing recognition of the equal worth of all human beings and is thus more frequently invoked to connote equal status (Waldron, 2012). Kantian dignity is the bestknown example, where each and every rational person has equivalent, and inviolable, worth (Schroeder, 2008). As Robert Simpson expresses it, ‘‘contemporary understanding of dignity demands that honour and esteem be portioned out to all in equal measure, insofar as we all occupy an equivalent rank, as members of a shared moral community. An infringement of person A’s dignity, for us, does not mean failing to treat A in accordance with the demands of a caste system. On the contrary, it means treating A as though she does belong in a caste system, and thus failing to treat her as a fully-entitled person or member of society’’ (Simpson, 2013: 708–9). Nowhere is this modern commitment to equal status more clearly expressed than in international human rights law. There are potentially innumerable ways that patients can feel that their equal status is undermined. A medical practitioner who fails to address the patient directly, or even meet his eye, signals his lower status. I would suggest that allowing 10 students to conduct rectal examinations on a frail and bewildered patient purely for training purposes is starkly at odds with respecting that patient as one’s equal (Chochinov, 2012: 18). But the equal status of a
patient is also not respected when others make it impossible for him to maintain the standards and values that he takes to exemplify worthy conduct. Such behaviour signals to the patient that he is not respected as an equal, a person who, like others, has standards and values which infuse his life with meaning and worth. Many difficult ethical questions remain. Philosophers will be interested to what extent our standards and values are purely personal, or largely shared social standards. Are they subjective or objective? We are forced to confront these questions in cases such as ‘dwarf throwing’, where the person being thrown suffers no humiliation but others regard his treatment as degrading, a violation of his equal status (Rosen, 2012). Similarly, we need to consider if we are required to respect a person’s personal standards if they are obnoxious, such as a patient who regards it as humiliating to be treated by a clinician from an ethnic minority. Even the exigencies of health care resources can raise questions about the imperative to respect dignity. An older woman might consider it a lack of respect when nursing staff serves her tea without a saucer (Seedhouse and Gallagher, 2002: 39). The ethical question arises as to whether treating a patient in accordance with her own standards and values in this case outweighs considerations of resource allocation, including the time of busy nursing staff. Respecting a person’s standards and values will not necessarily trump other considerations. Conflict between values is standard fare in philosophical discussion: there is no reason to suppose it would not also arise on occasion between dignity and other values in the complex environment of health care.
3. Dignity in health care Despite all of these ethical complexities, the concept of dignity is considerably less ‘deconstructed’ than much of the existing health care literature would indicate. We can make more coherent sense of the often long lists of disparate items that are said to constitute dignified treatment, or items that are said to undermine it. To treat a person with respect for his or her dignity means to respect his or her capacity to uphold standards and values, and thereby avoid humiliating and shaming. Respecting the patient’s ability to realise his or her standards and values is fundamental to respecting his or her equal status as a person for whom the ability to live in accordance with standards and values is vitally important. Many concrete behaviours, institutional practices, built environments, and interpersonal interactions can threaten a person’s ability to uphold her values and standards, particularly in contexts of vulnerability. Existing qualitative research highlights many of these concrete threats. Consider the ‘Dignity Model’ of palliative care, developed by Harvey Max Chochinov and his colleagues based on interviews and surveys with terminally ill patients (Chochinov, 2012; Chochinov et al., 2008). There are three categories within the model – illness related concerns, the dignity conserving repertoire and the social dignity inventory – based on patients’ identification of factors impacting their dignity. Under each category is a
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longer list of more concrete behaviours, circumstances and physical and psychological states. Most of the items on the Dignity Model are encapsulated by the notion of dignity because they closely relate to the individual’s capacity to uphold their standards and values during the dying process. For example, the model identifies a person’s level of independence and symptom control as affecting their sense of dignity (Chochinov, 2012). High levels of dependence, especially with washing, toileting and eating, are at odds with the standards and values that most people embrace throughout their adult lives (Enes, 2003; Oosterveld-Vlug et al., 2014; van Gennip et al., 2013a,b). It is unsurprising that younger patients identify this issue as particularly threatening to their dignity: such dependence is especially at odds with commonly shared standards of independence assumed for younger people, and also because many younger patients will not have experienced a slower progression into dependency with the potential for adaptation and the acceptance of alternative standards and values (Chochinov, 2012). Poor symptom control such as loss of bowel function, vomiting, and severe pain also make it extremely difficult to continue to live and interact with others in a manner that most people strive to (Chochinov, 2012; Guo and Jacelon, 2014). These effects on how patients live out the rest of their lives and interact with others can shame and embarrass them, erode their perceived standing in the eyes of others, and undermine their self-worth. The threat to dignity is obviously not the only thing bad about pain. As philosophers would put it, pain can also just be bad in itself, or intrinsically bad. Indeed, for many of the items on the Dignity Model there can be many different reasons for why patients identify them as important: pain may be bad for one patient for a number of reasons, and bad for a number of different patients for different reasons. But when people identify uncontrolled pain also as a specific threat to their dignity, they highlight how it can destroy the ability to be, and interact as, the person they consider worthy. Other items on the Dignity Model have an even more direct link to the ability to live by one’s standards and values and thereby maintain one’s sense of equal worth. Continuity of self, role preservation, maintenance of pride, maintaining normalcy, burden to others and privacy boundaries, all relate directly to maintaining one’s standards and values: those that shape one’s identity, infuse one’s roles (as parent, lawyer, nurse, homemaker) with meaning and worth, and determine how one wishes to interact with others, with what degree of discreetness, dependency and so on (Chochinov, 2012). Consider: a dying patient is unlikely to be distressed by his inability to continue actively to father his children unless he believes his fathering activities are valuable, just as another patient will not suffer from no longer being able to pursue her career unless she believes that career is of meaning and value. When dying people identify the loss of all of these things as connected to diminishing dignity, they are identifying the loss of the standards and values that have shaped their lives. Chochinov notes the ‘‘intriguing’’ association between preoccupation with personal appearance and fractured dignity (Baillie, 2009; Chochinov, 2012; Enes, 2003;
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Gallagher et al., 2008; Oosterveld-Vlug et al., 2014). But care over personal appearance and the image thereby projected to others is one of the most basic standards that influences our daily conduct (Killmister, 2010). This is not the exclusive domain of the fashionista: most of us wish to present to others as at the very least clean and tidy. Most of us feel deeply that the inability to present with such minimal standards to others lowers our standing in their eyes. This is experienced as shameful and humiliating. Equally important is the care tenor, that is, the manner in which health care practitioners and other staff interact with patients (Chochinov, 2012; Enes, 2003; Gallagher et al., 2008; Oosterveld-Vlug et al., 2014; Seedhouse and Gallagher, 2002; van Gennip et al., 2013a,b). As was mentioned earlier, staff can signal quite explicitly that they do not hold a patient in high regard. Staff who talk to a patient as though she is a child (Dickert and Ne, 2009; Woolhead et al., 2004), or fail to provide minimal degrees of privacy (Baillie, 2009; Gallagher et al., 2008; Guo and Jacelon, 2014; Walsh and Kowanko, 2002), or are hurried and behave as though they are inconvenienced (Enes, 2003; Guo and Jacelon, 2014; Walsh and Kowanko, 2002), signal to the patient that she is not important, and that her ongoing capacity to live in a manner she, and most others, consider worthy is to them of little significance. Intentionally or not, such behaviour sends unequivocal signals about the esteem in which the patient is held, whether he or she is respected as someone worthy of living their life according to standards and values which, in many of these cases, are shared by most of us. The most recent systematic review provides further support for this conceptual framework by identifying symptom control, privacy and staff behaviour as the most common themes in dignity research (Pringle et al., 2015). The issue of ‘individuality’ or being treated as an individual also recurs frequently in dignity research, as patients, particularly those in institutions, rail against being stripped of their status as unique individuals with their own standards and values (Anderberg et al., 2007; Walsh and Kowanko, 2002; Woolhead et al., 2004). Don Berwick movingly captures its importance in his famous defence of patient-centred care: What chills my bones is indignity. It is the loss of influence on what happens to me. It is the image of myself in a hospital gown, homogenized, anonymous, powerless, no longer myself. It is the sound of a young nurse calling me, ‘‘Donald,’’ which is a name I never use— it’s ‘‘Don,’’ or, for him or her, ‘‘Dr. Berwick.’’. . . That’s what scares me: to be made helpless before my time, to be made ignorant when I want to know, to be made to sit when I wish to stand, to be alone when I need to hold my wife’s hand, to eat what I do not wish to eat, to be named what I do not wish to be named, to be told when I wish to be asked, to be awoken when I wish to sleep. Call it patient-centeredness, but, I suggest, this is the core: it is that property of care that welcomes me to assert my humanity and my individuality (Berwick, 2009: 564) The Dignity Model and other dignity research also identifies autonomy and control as associated with dignity. Autonomy and control have dual importance to dignity.
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Firstly, they are in themselves personal attributes widely valued by most people, and a particular source of our status as equals. To be able to take care of oneself and direct one’s own life is a part of most people’s values to some degree. Secondly, autonomy and control are important factors that influence whether individuals can maintain the ability to continue to live according to their other standards and values (Chochinov, 2012; Guo and Jacelon, 2014; Woolhead et al., 2004). People who have little control over their environment or diminishing mastery over their own minds or bodies, are heavily dependent on others to ensure their standards and values are maintained. Dignity is thus closely entwined with the concept of autonomy, but it is not synonymous with it (Killmister, 2010; Schroeder, 2008). Autonomy is about one’s level of control and choice. In health care contexts it is particularly connected to the issue of informed consent and the right to accept or decline treatment. Respecting a person’s dignity includes respect for that person’s choices, but dignity is a broader value that is important even when choice is not particularly relevant. Many patients move beyond the point where they are able to exercise clear choice, yet it remains imperative to respect the standards and values that have given their life meaning. It is no less an assault on dignity to leave a person with severe dementia exposed on the toilet than it is to leave a young person in such a situation. It is not the patient’s autonomy or informed consent that is violated in a case like this; it is their dignity. There are also many circumstances where even for fully capable patients the issue of choice is secondary. For example, it might well be at odds with a person’s preferences when health care staff call her ‘pet’ or ‘dear’, or when they fail to close the curtain when performing medical procedures, or when they show no interest in helping her to maintain a clean and neat appearance. But the real insult is not simply that such behaviour is at odds with the patient’s choice: it is that it shows a profound disregard for the patient as an individual with her own standards and values who is humiliated when she is forced to transgress them. The conceptual framework sheds light on why dignity research is especially focused on the dying (Allmark, 2002; Chochinov, 2012; Chochinov et al., 2002; Enes, 2003; Guo and Jacelon, 2014; Pringle et al., 2015) the old (Anderberg et al., 2007; Franklin et al., 2006; Gallagher et al., 2008; Hall et al., 2009; Seedhouse and Gallagher, 2002; Woolhead et al., 2004) and those hospitalized (Baillie, 2009; Joffe et al., 2003; Matiti and Trorey, 2004). Because of their frailty, and often limited control over their environments, all such groups of people are especially vulnerable to being unable to continue to live in accordance with their standards and values and thus in a manner where their sense of self worth is maintained. Add to this cultural practices that can disrespect older people and treat them like small children, and conditions are especially ripe for failure to respect dignity. People who are dying also raise interesting dignity issues, in addition to those just mentioned. Most people want to be remembered for who they have been, who they have understood themselves to be, throughout their lives: ‘‘Most of us see death. . .as the final act of life’s drama, and we want that
last act to reflect our own convictions, those we have tried to live by, not the convictions of others forced on us in our most vulnerable moment’’ (Dworkin et al., 1997). 4. Dignity is not synonymous with ‘good quality health care’ or ‘a good death’ Not everything that health care researchers have identified as part of dignity will be convincingly captured by the concept of dignity developed here. For example, The Dignity Model identifies ‘‘resilience or fighting spirit’’ and ‘‘living in the moment’’ as associated with the sense of dignity (Chochinov et al., 2012). It is always possible to tell a story that these attributes are part of, or help bolster, a person’s values and standards. However, it is likely that they are instead more important simply to other aspects of psychological well-being, such as avoiding distress. Other examples of tenuous connection to dignity include the identification of a ‘‘safe and calm environment’’ as part of dignified end-of-life care (Guo and Jacelon, 2014). While environmental features can profoundly impact a person’s ability to live, and die, in accordance with his or her standards, a safe environment is surely just an independent feature of good quality health care rather than a constituent of dignity more specifically. These examples do not cast serious doubt on the plausibility of the proposed concept of dignity. It was argued earlier that if dignity is not just a fashionable new term for ‘a good death’ or ‘good quality health care’, then it is imperative to reach an understanding of what is specific about dignity that is not captured by other health care values, such as safety, autonomy, compassion and the like. Yet some existing literature does indeed appear to analyse dignity in terms of the broader notion of good health care, including good palliative care or, simply, a ‘good death’. For example, in a recent systematic review of dignity and patient-centred care, over half of the existing literature cited addresses the quality of health care, or of patients’ experience of health care, rather than addressing dignity more specifically (Pringle et al., 2015). This is not an uncommon trend within other literature. Even Chichinov’s Dignity Model, which has done more than any other research to zone in closely on dignity, often reverts to broader discussion of patient ‘‘distress’’ or patient ‘‘satisfaction’’. Van Gennip and her colleagues claim that for the majority of people ‘‘a good death’’ is simply synonymous with ‘‘a dignified death’’ (van Gennip et al., 2013a,b). Respecting patients’ dignity is part of good quality health care but is not synonymous with it, just as it is a part of, not synonymous with, a good death. In addition to values such as safety, compassion, and autonomy, respecting dignity is an additional, unique value: it refers to upholding the patient’s standing as an equal, especially by respecting her capacity to live in accordance with her standards and values. Conceptual analysis will not on its own be sufficient to provide a detailed description of the concrete requirements of dignified care in practice. It will be an ongoing matter for those directly involved in each patient’s care to determine what aspects of care may clash with his or her standards and values and undermine his or her self worth. What this
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conceptual analysis does offer is clarification on dignity as a unique value, and an understanding of its importance in health care contexts. It therefore also provides a degree of synthesis of what has remained a relatively deconstructed notion in health care literature and policy. 5. Conclusion Dignity is not a useless concept. Dignity is of special importance in health care, as our own failing bodies, our vulnerability, as well as loss of control over the environment, can all significantly impact the ability to uphold the standards and values central to our lives. Being treated with dignity adds something crucial to good health care, beyond high quality medical care, being treated as an autonomous agent, and being treated with compassion. It signals that each and every one of us is equally worthy, capable of the unique human ability to shape a life according to a set of standards and values which infuse that life with meaning. This conceptual clarification identifies the unique harm that is inflicted on people when we fail to respect their dignity, namely, humiliation and the loss of self worth, and an implicit allocation to an inferior rank. References Allmark, P., 2002. Death with dignity. J. Med. Ethics 28 (4), 255–257. Anderberg, P., Lepp, M., Berglund, A.L., Segesten, K., 2007. Preserving dignity in caring for older adults: a concept analysis. J. Adv. Nurs. 59 (6), 635–643. Baillie, L., 2009. Patient dignity in an acute hospital setting: a case study. Int. J. Nurs. Stud. 46 (1), 23–36. Berwick, D.M., 2009. What ‘patient-centered’ should mean: confessions of an extremist. Health Aff. (Millwood) 28 (4), w555–w565. Chochinov, H.M., 2012. Dignity Therapy. Final Words for Final Days. Oxford University Press, New York. Chochinov, H.M., 2002. Dignity-conserving care – a new model for palliative care: helping the patient feel valued. JAMA 287 (17), 2253–2260. Chochinov, H.M., Cann, B., Cullihall, K., Kristjanson, L., Harlos, M., McClement, S.E., Hack, T.F., Hassard, T., 2012. Dignity therapy: a feasibility study of elders in long-term care. Palliat. Support. Care 10 (1), 3–15. Chochinov, H.M., Hack, T., McClement, S., Kristjanson, L., Harlos, M., 2002. Dignity in the terminally ill: a developing empirical model. Soc. Sci. Med. 54 (3), 433–443. Chochinov, H.M., Hassard, T., McClement, S., Hack, T., Kristjanson, L.J., Harlos, M., Sinclair, S., Murray, A., 2008. The patient dignity inventory: a novel way of measuring dignity-related distress in palliative care. J. Pain Symptom Manag. 36 (6), 559–571. Dickert, N.W., Kass, N.E., 2009. Understanding respect: learning from patients. J. Med. Ethics 35 (2), 419–423. Dworkin, R., Nagel, T., Nozick, R., Rawls, J., Scanlon, T., Jarvis Thomson, J., 1997. Assisted suicide: the philosophers’ briefIn: New York Times Book Review.
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