- Open Access
A systematic scoping review on patients’ perceptions of dignity
BMC Palliative Care volume 21, Article number: 118 (2022)
A socioculturally appropriate appreciation of dignity is pivotal to the effective provision of care for dying patients. Yet concepts of dignity remain poorly defined. To address this gap in understanding and enhance dignity conserving end-of-life care, a review of current concepts of dignity is proposed.
To address its primary research question “How do patients conceive the concept of dignity at the end of life?”, this review appraises regnant concepts and influences of dignity, and evaluates current dignity conserving practices. To enhance accountability, transparency and reproducibility, this review employs the Ring Theory of Personhood (RToP) as its theoretical lens to guide a Systematic Evidence Based Approach guided Systematic Scoping Review (SSR in SEBA) of patient perspectives of dignity. Three independent teams of reviewers independently analysed included articles from a structured search of PubMed, Embase, PsycINFO, Scopus, CINAHL and Cochrane Databases using thematic and content analyses. The themes and categories identified were compared and combined using the Funnelling Process to create domains that guide the discussion that follows.
Seventy-eight thousand five hundred seventy-five abstracts were identified, 645 articles were reviewed, and 127 articles were included. The three domains identified were definitions of dignity, influences upon perceptions of dignity, and dignity conserving care.
This SSR in SEBA affirms the notion that dignity is intimately entwined with self-concepts of personhood and that effective dignity conserving measures at the end of life must be guided by the patient’s concept of dignity. This SSR in SEBA posits that such personalised culturally sensitive, and timely support of patients, their family and loved ones may be possible through the early and longitudinal application of a RToP based tool.
Drawn from the Latin terms dignitus (merit) and dignus (worth) the concept of dignity is seen as the embodiment of an individual’s intrinsic and inalienable right to respect, and a measure of self-worth and honour [1,2,3]. Yet, the concept of dignity takes a variety of forms in the professional, legal, philosophical and ethics realm. For some it is inextricably tied to the moral, ethical and legal notions of autonomy , and individual rights  whilst to others dignity is a construct rooted in regnant sociocultural influences and beliefs . In extoling dignity’s evolving, personalized often context dependent nature Chochinov adds a further dimension to current concepts . Indeed, failure to acknowledge dignity as an evolving sociocultural construct shaped by ‘both social and cultural constructs and the interrelationships between them’ that has exposed differences in Eastern and Western concepts of dignity and raised questions as to the efficacy of generic dignity conserving measures in healthcare [6, 8,9,10].
Need for this review
With dignity conservation a crucial aspect of end of life care, better understanding of the concept of dignity is crucial to the provision of individualised care for patients, their families, and caregivers .
As a socio-cultural concept influenced by regnant religious beliefs, societal mores, moral and cultural codes, and evolving personal narratives and contextual considerations, the study of current theories of dignity demands a holistic and longitudinal evaluation. Positing that current concepts of dignity are informed by self-concepts of personhood or “what makes you, you”, we adopt Krishna  ’s concept of the Ring Theory of Personhood (RToP) to evaluate current ideas on dignity [13,14,15]. Shown to capture individualised notions of identity, self-worth and respect [16,17,18,19,20,21] that are intimately associated with current ideas of dignity the RToP provides a robust and evidence-based lens to appraise current this individualised and changing concept (Fig. 1).
The employ of the RToP as a theoretical lens is also based on current characterisation of dignity . Jacobson  suggests the existence of human dignity and social dignity. Jacobson  posits that human dignity “belongs to every human being simply by virtue of being human” and that it “cannot be created or destroyed”. Social dignity is “generated in the interactions between and amongst individuals, collectives and societies” and confers self-respect and self-worth as well as respect of the individual by the collective and society . Macklin  on the other hand suggests that dignity is a function of autonomous action. Ho, Krishna , Foo, Zheng , Ho, Krishna , Chong, Quah , Chai, Krishna , suggest that dignity and indeed respect for the individual relates to their associations, responsibilities, roles and place within a family unit whilst Ong, Krishna , Wei and Krishna , Lee, Sim , Loh, Tan  propose that selfhood, individual dignity, personal rights and respect are tied to wider sociocultural constructs.
Each of these concepts of dignity are captured in the clinically-evidenced RToP’s Innate, Individual, Relational and Societal Rings. Each ring contains specific beliefs, moral values, ethical principles, familial mores, cultural norms, attitudes, thoughts, decisional preferences, roles and responsibilities that create domain-based identities which in turn inform personal concepts of dignity.
Much like Jacobson  notion of human dignity, the Innate Ring is anchored in the belief that all humans are deserving of personhood, “irrespective of clinical status, culture, creed, gender, sexual orientation, religion, or appearance” [13,14,15, 22, 23]. The Innate Ring contains gender, name, family identity, religious and cultural, community and nationality based beliefs, moral values, ethical principles, familial mores, cultural norms, attitudes, thoughts, decisional preferences, roles and responsibilities (henceforth beliefs, values and principles).
Much like Macklin’s  notion of dignity being a function of autonomous function, the Individual Ring is informed by the individual’s preferences, biases, beliefs, mores, norms, values and principles which in turn inform personal concepts of dignity. Yet the Individual Ring is also informed by psycho-emotional, experiential, perceptual, and contextual considerations; individual preferences and decision-making styles and biases; and prevailing professional, sociocultural, legal, ethical, and personal considerations. The Individual Ring reveals the evolving and context specific nature of concepts of dignity .
The Relational Ring consists of all the relationships that the individual considers close and important to them. As current concepts of dignity acknowledge that concepts of identity, dignity and personhood are shaped by the beliefs, values and principles held by people with whom the individual shares personal and important ties with, the Relational Ring is not exclusively informed by family members and considers the influence of friends with whom the individual determines shares important ties with them [28,29,30]. The Societal Ring is the outermost ring and encompasses societal, religious, professional and legal expectations and institutional obligations and legal standards of practice. These facets inform the individual’s clinical responsibilities, academic codes of conduct, institutional roles, societal expectations, professional duties, and legal and ethical codes of conduct. It could be said that the Relational and Societal Rings embody Jacobson  ’s notion of social dignity.
With concepts of personhood and dignity being personalised and context-dependent, how they are conceived with respect to issues such as withholding and withdrawing treatment , care determinations , collusion , and end-of-life care , requires careful consideration. The RToP offers both a reflexive, longitudinal, holistic and evidence-based approach to capture evolving concepts of dignity [12, 32,33,34,35,36,37,38,39]. Using the lens of the RToP it is possible to understand how the Individual Ring and its associated concept of Individual Identity balance sometimes competing preferences, biases, beliefs, mores, norms, values and principles, in a variety of psycho-emotional, experiential, perceptual, and contextual considerations; and prevailing professional, sociocultural, legal, ethical, and personal considerations [16, 17, 40,41,42,43,44].
Krishna’s Systematic Evidence-Based Approach (SEBA) is adopted to guide this systematic scoping review (SSR) (henceforth SSR in SEBA) [40, 45,46,47,48,49,50,51]. The aim of this review is to identify available data, key characteristics and knowledge gaps in current concepts of dignity in the literature. The SSR in SEBA’s constructivist approach [46, 47, 52,53,54,55,56,57] and relativist lens [58,59,60,61,62] acknowledges dignity as a sociocultural construct. It also facilitates systematic extraction, synthesis and summary of actionable and applicable information across a diverse range of study formats and overcomes the absence of a common understanding of dignity.
To provide a balanced review, an expert team comprised of a librarian from the National University of Singapore’s (NUS) Yong Loo Lin School of Medicine (YLLSoM) and local educational experts and clinicians at YLLSoM, National Cancer Centre Singapore, Palliative Care Institute Liverpool, and Duke-NUS Medical School (henceforth the expert team) helped to guide the 6 stages of the SEBA process.
The SEBA process consists of the 1) Systematic Approach, 2) Split Approach, 3) Jigsaw Perspective, 4) Funnelling Process 5) Analysis of data and non-data driven literature, and 6) Discussion Synthesis (Fig. 2).
Stage 1 of SEBA: Systematic approach
Stage 1 of the SEBA methodology involves a systematic search of key databases to answer the primary and secondary research questions established by the research and expert teams.
Determining the title and background of the review
The expert team, stakeholders and the research team determined the goals of the study and confined the study population, context and concept of the systematic scoping review to the perspectives and factors affecting dignity amongst patients.
Identifying the research question
Guided by the expert team, the research team determined the primary research question to be: “ How do patients conceive the concept of dignity?” The secondary research questions were: What factors affect patient perceptions of dignity?” and “How are prevailing dignity-conserving care practices perceived by patients?” These questions were designed around the Population, Concept, and Context (PCC) elements of the inclusion criteria . In keeping with the SEBA methodology, the review was guided by the PRISMA-P 2015 (Preferred Reporting Items for Systematic Reviews and Meta-Analyses Protocols) checklist .
In keeping with the SEBA methodology, a PICOs (Population, Intervention, Comparison, Outcome, study design) format was adopted to guide the research process (Table 1). Here there is was no comparison group.
Seven members of the research team carried out independent searches of five bibliographic databases (PubMed, Embase, PsycINFO, Cochrane Database of Systematic Reviews, CINAHL, Scopus). To facilitate this approach, the search process saw three experienced senior researchers well versed in carrying out systematic reviews and systematic scoping reviews each meet with a team of 2–3 medical students to guide them database searches. This approach was to enhance training of new researchers and to ensure that at least two teams were independently reviewing each database. Each team met regularly and discussed their findings. After a search of the first 100 articles in a particular database, the medical students and the senior researcher compared their findings at an online meeting. Subsequently the teams met at specific time points, often after reviewing a predetermined number of included articles to discuss their concerns, exchange opinions and advance their understanding of the research process and the area of study. Interrater reliability was not evaluated.
In keeping with Pham, Rajic  ’s recommendations on sustaining the research process and accommodating to existing manpower and time constraints, the research team restricted the searches to articles published between 1st January 2000 and 31st December 2020. Quantitative, mixed and qualitative research methodologies meeting the inclusion criteria were included.
Extracting and Charting
Working in teams of three medical students and a senior reviewer, the teams reviewed the abstracts and titles and discussed their findings at regular meetings. The findings of the three teams were then discussed at online meetings where Sandelowski and Barroso  ’s ‘negotiated consensual validation’ was used to achieve consensus on the final list of titles to be reviewed. The three research teams repeated this process, independently studying all the full text articles on the final list of titles, creating their own lists of articles to be included and discussing their findings online at research meetings. Consensus was achieved on the final list of articles to be analysed.
Stage 2 of SEBA: Split approach
The first team summarised and tabulated the included full-text articles in keeping with recommendations drawn from Wong, Greenhalgh  ’s RAMESES publication standards: meta-narrative reviews and Popay, Roberts  ’s “Guidance on the conduct of narrative synthesis in systematic reviews”. The tabulated summaries served to ensure that key aspects of included articles were not lost (Supplementary File 1).
Concurrently, the second team analysed the included articles using Braun and Clarke  ’s approach to thematic analysis. In phase 1, the research team carried out independent reviews, ‘actively’ reading the included articles to find meaning and patterns in the data. In phase 2, ‘codes’ were constructed from the ‘surface’ meaning and collated into a code book to code and analyse the rest of the articles using an iterative step-by-step process. As new codes emerged, these were associated with previous codes and concepts. In phase 3, the categories were organised into themes that best depict the data. An inductive approach allowed themes to be “defined from the raw data without any predetermined classification” . In phase 4, the themes were refined to best represent the whole data set and discussed. In phase 5, the research team discussed the results of their independent analysis online and at reviewer meetings. ‘Negotiated consensual validation’ was used to determine a final list of themes approach and ensure the final themes.
A third team of researchers employed Hsieh and Shannon  ’s approach to directed content analysis  to analyse the included articles. Analysis using the directed content analysis approach involved “identifying and operationalizing a priori coding categories”. The first stage saw the research team draw categories from Chochinov  ’s “Dignity-Conserving Care – A New Model for Palliative Care” to guide the coding of the articles. Any data not captured by these codes were assigned a new code.
Stage 3 of SEBA: Jigsaw perspective
In keeping with SEBA’s reiterative process, the themes and categories were reviewed by the expert and research teams. Overlaps between the categories and themes were viewed as pieces of a jigsaw puzzle with the intention of combining overlapping/complementary pieces to create a bigger piece of the puzzle referred to as themes/categories. To create themes/categories the Jigsaw Perspective adopted Phases 4 to 6 of France, Uny  ’s adaptation of Noblit, Hare  ’s seven phases of meta-ethnography. As per Phase 4, the themes and the categories identified in the Split Approach are grouped together according to their focus. These groupings of categories and themes were then contextualized through the review of the articles from which they were drawn from. Reciprocal translation was used to determine if the themes and categories can be used interchangeably. This allows the themes and categories to be combined to form themes/categories.
Stage 4 of SEBA: Funnelling process
The Funnelling Process employs Phases 3 to 5. To begin, the themes/categories identified in the Jigsaw Approach are juxtaposed with key messages identified in the tabulated summaries to create domains. The process sees the goals, approaches and assessment themes combined within the categories of patient care and procedural skills, interpersonal communication skills, professionalism, knowledge and enablers and barriers. These domains form the basis for ‘the line of argument’ in Stage 6 of SEBA.
78,575 abstracts were identified from the five databases, 645 articles were reviewed, and 127 articles were included (Fig. 3). The three domains identified were: definitions of dignity, factors affecting perceptions of dignity, and dignity-conserving care.
Domain 1: Definitions of dignity
Forty-six articles proposed patient definitions of dignity. These characterisations and definitions were analysed through lens of the RToP. Subdomains one to four highlight their focus.
Subdomain 1: The innate ring
Patients believe that being treated “as a person” is an intrinsic and inalienable right of any human being [78,79,80,81,82] by virtue of their ‘spiritual connections’ or as a result of their human appearance [82,83,84,85,86].
Subdomain 2: The individual ring
Dignity is also characterised by respect of a patient’s individuality [6, 78, 82, 83, 87,88,89,90,91,92,93] and independence [78, 80, 83, 84, 86, 87, 89, 91, 93,94,95,96]. Respect for independence and individuality is evinced in the treatment of symptoms and efforts to preserve a patient’s ability for self-determination [79, 82, 85, 94, 97,98,99,100].
Subdomain 3: The relational ring
Preservation of familial ties [80, 87, 92, 95] and roles  is a key aspect of dignity [84, 87, 90, 92, 95, 101]. Care and support from family members enhanced a patient’s dignity [91,92,93, 102] whilst being a burden to the family diminished it [87, 89, 91, 93, 95].
Subdomain 4: The societal ring
Domain 2: Factors affecting patients’ perceptions of dignity
Current influences upon patient’s concepts of dignity may be similarly viewed through the RToP which help focus support.
Subdomain 1: The innate ring
The patient’s sense of self, body image and spirituality impacts their sense of dignity. Thus age-appropriate care [7, 84, 103,104,105] that also respects the patient’s physical characteristics [83,84,85, 106,107,108,109,110,111], culture [75, 78, 82, 92, 94] and beliefs [95, 112, 113] is essential to maintaining the patient’s self-image [7, 82, 84, 104, 108, 114,115,116,117,118] and well-being [75, 81, 83, 84, 89, 95, 98, 100, 110, 112, 119,120,121,122,123,124,125,126,127,128]. Failure to respect this holistic concept replete with physical, cultural, age, gender, spiritual and social narrative [95, 112, 113] may result in a negative body image [7, 82, 84, 104, 108, 114,115,116,117,118], a loss of self [6, 7, 87, 91, 102, 104, 118, 129,130,131,132,133,134,135] and a loss of will to live .
Sustaining a patient’s holistic concept of self [7, 82, 84, 104, 108, 114,115,116,117,118] is especially pertinent when treating oedema and cachexia, and in the management of surgical scarring, drains or other attached medical equipment [75, 81, 83, 84, 89, 95, 98, 100, 110, 112, 119,120,121,122,123,124,125,126,127,128]. Such an approach helps patient’s make sense of their illness and the dying process [81, 95, 98, 120,121,122, 125], attenuates existential distress [121, 122, 137] and diminishes the effects of a loss of dignity [7, 75, 108, 120, 138, 139].
Subdomain 2: The individual ring
Dignity is conserved by sustaining their cognitive abilities [7, 83, 90,91,92, 96, 97, 102,103,104,105, 108, 118, 124, 132, 137, 139,140,141,142,143], autonomous function [6, 78, 79, 83, 88, 89, 92, 93, 96,97,98,99, 102, 103, 107, 108, 110, 111, 114, 122, 124, 138, 144,145,146,147,148,149,150,151] and independence in personal care [78, 80, 83, 84, 86, 87, 89, 91, 93,94,95,96, 105, 108, 111, 113, 116, 124, 127, 128, 139, 140, 143, 147, 150, 152, 153] and activities of daily living [83, 84, 87, 108, 111, 113, 116, 128, 139, 140, 147, 152]. This facilitates a patient’s ability to maintain control over their finances, personal affairs, care determinations including their place of care and death [79, 90, 98, 107, 110, 116, 121, 138, 144, 145, 148, 149, 154], privacy [75, 82, 83, 87, 89, 92, 93, 110, 111, 121, 140, 143, 150], individuality, and legacy are key determinants of self-concepts of dignity [7, 83, 90,91,92, 96,97,98, 102,103,104,105, 108, 118, 124, 129, 131, 132, 137, 139,140,141,142,143, 155].
Conversely uncertainty [7, 140, 143], changing disease trajectories and prognosis [78, 88, 93, 105, 108, 120, 147, 156, 157], functional deterioration [6, 7, 83, 84, 87, 88, 93, 95,96,97, 102, 104, 108, 109, 115,116,117,118, 128, 129, 132, 140, 147, 158,159,160,161] and a loss of control over their financial affairs [95, 111, 121] impairs the patient’s ability to determine their desired place of care and death  and predisposes them to a sense of ‘unfinished business’ [7, 98, 118, 131] and an erosion of dignity [6, 78, 82, 83, 87,88,89,90,91,92,93, 108, 110, 112, 121, 146,147,148, 152, 153, 162] and “selfhood” [6, 78, 93, 105, 140, 147]. Poor pain control [87, 90, 111, 127, 147, 152, 163, 164], physical [78, 83, 89, 94, 108, 111, 112, 127, 128, 147, 150,151,152, 165], and psychoemotional support [75, 78, 79, 83, 87, 89, 94, 108, 110, 111, 114, 120, 147, 150, 152, 162] have similar detrimental effects on the patient’s dignity [6, 7, 82,83,84, 87, 88, 90, 93, 95,96,97, 102, 104, 108, 109, 115,116,117,118, 128,129,130,131,132,133,134,135, 137, 140, 143, 147, 158,159,160,161, 166] and may manifest as fear [75, 79, 83, 108, 147], loneliness , emotional lability [112, 118, 129, 167], poor acceptance of their clinical state [88, 98, 105, 120], a loss of hope [78, 108, 147, 156, 157], self-esteem [6, 10, 88, 89, 93, 101, 110, 123] and purpose [78, 87, 105, 108, 118, 127, 129, 130, 148] as well as psychological distress [78, 87, 102, 105, 108, 118, 127, 129, 130, 148, 168, 169].
Subdomain 3: The relational ring
The Relational Ring is influenced by reliance on family [90, 95, 101, 115, 116, 137, 147], their willingness to support the patient’s needs [90, 95, 101, 115, 116, 137, 147], the patient’s sense of connectedness [91,92,93, 102, 111, 113, 116, 121, 122, 124] and the quality of their relationships [82, 87, 115, 124, 131, 133, 139]. At the heart of these considerations are patients’ desire to be perceived in a positive light [87, 90, 102, 130, 146, 154] and to maintain their role and status within the family [90, 92, 114, 122, 124, 152]. Feelings of being a burden [87, 89, 91, 93, 95, 108, 154], conflict [121, 124, 125], isolation [111, 113, 124] are especially deleterious to dignity [7, 84, 95, 170]. Table 2 reveals other considerations in the Relational Ring.
Subdomain 4: The societal ring
Societal concepts of dignity feature geographical nuances in current concepts of dignity and reflect the influence of regnant ‘belief systems, experiences, and culture’ on these concepts  (Table 3). This especially evident in the differences in the role of relational ties and influences on autonomy in Western and Asian data [6, 10]. Data from China and Japan suggests the influence of relational autonomy, which prioritises familial interests, over individual interests within concepts of personhood and dignity [13, 16, 45].
Domain 3: Dignity conserving care
Dignity conserving care tends to be holistic and involves many if not all of the rings of the RToP. These are summarised in Table 4 for ease of review. The efficacy of these interventions rely on awareness of cultural sensitivities [85, 161], multidisciplinary team support [168, 183], effective communication [82, 96, 97] and appropriate infrastructure [93, 184]. Most of these interventions have a positive impact though five articles reported some of the negative outcomes.
Stage 5 of SEBA: Analysis of data and non-data driven literature
Most of the articles included were data driven (87 out of 127), while the remaining articles were non-data-based articles (grey literature, opinion, perspectives, editorial, letters). The expert team and stakeholders raised concerns that data from grey literature, which was neither quality-assessed nor necessarily evidence-based could be a source of bias during the crafting of the discussion. As a result of these concerns, the research team thematically analysed data from grey literature and non-research-based pieces such as letters, opinion and perspective pieces, commentaries and editorials included in this review. The themes identified were compared against themes drawn from peer reviewed evidenced based data. This analysis revealed no differences in the themes from the two sources of data.
In addition, the research team employed the Medical Education Research Study Quality Instrument (MERSQI)  and the Consolidated Criteria for Reporting Qualitative Studies (COREQ)  to evaluate the quality of qualitative and quantitative studies included in this review (Supplementary File 1).
Stage 6 of SEBA: Synthesis of the discussion
The discussion of this paper is framed around the domains identified in Stage 4 and is guided by the Best Evidence Medical Education (BEME) Collaboration guide  and the STORIES (Structured approach to the Reporting In healthcare education of Evidence Synthesis) statement .
In answering its primary and secondary research questions, this SSR in SEBA reveals that current patient defined concepts of dignity are intrinsically rooted within self-concepts of personhood and identity. Here there are core aspects to this sociocultural construct with concepts of dignity across different settings acknowledging that dignity be framed as the right to be treated as autonomous individual deserving of respect and care in a manner that is in keeping with their beliefs, values, self-concepts and changing needs simply by virtue of their status as a human being and irrespective of their circumstances [80, 99]. It is upon this platform that Chochinov, Krisjanson  ’s concept of dignity as “individualistic, transient, and often tied to personal goals and social circumstances”, and Street and Kissane  ’s notion of dignity as “relational and embodied ideas”, are built upon.  ’s concept of dignity as a function of “inherent” and “imputed” facets captures this notion. Robinson, Phipps , define “inherent dignity” as being intrinsic to all humans and suggest that this concept is individualized by “imputed dignity” where an individual refines and builds upon this notion using their narratives, values, beliefs and principles. The RToP provides a means of elucidating and contending with this nuanced perspective.
Echoing current concepts of dignity the RToP underscores the notion that a patient’s concept of dignity is both individual and evolving, changing over time and circumstances, and shaped by individual experiences, sociocultural circumstances, disease trajectory, setting, needs, and concepts of personhood and dignity [152, 209, 210]. However more significantly the RToP lens allows HCPs to determine which of the Innate, Individual, Relational and Societal rings dominate thinking and what elements within them need particular attention at a particular moment and context. Here the complexity of these evolving concepts underlines the need for a personalized, holistic, and longitudinal approach that is best met by a well-trained, responsive multidisciplinary team. A multidisciplinary team will also be better able to support patients, their caregivers, and their loved ones longitudinally and in a timely and holistic manner that is in a manner that is consistent with their sociocultural identities, spiritual needs, and self-concepts of their personhood [7, 88, 95, 97, 102, 103, 154].
Perhaps just as significantly a multidisciplinary team would also be better able to provide timely and regular appraisal, support and and follow-up of patients and their families throughout their illness journey [7, 88, 95, 97, 102, 103, 154]. Here the RToP may be employed as a tool to assess a patient’s concepts of dignity in different circumstances and at different timepoints along their disease trajectory. Mapping these changes over time would be especially useful at the end of life care when responsive, accessible, empathetic and personalised communications and personalised support is especially critical.
It is here in considering the design, study and longitudinal use of an adapted RToP based tool that the role of the host organisation becomes clear. It is the host organisation that must ensure an effective infrastructure that trains and supports the multidisciplinary team, an accessible and robust communication pathway and the support needed to evaluate and address the patient’s needs and goals.
One of the main limitations of this study was its inability to differentiate personalised concepts of dignity amongst a wide array of patients replete with their particular circumstances, sociocultural and healthcare settings. This is further limited by confining our review to publications in English or had English translations. Of the 127 included articles, most were from the West and especially the United Kingdom, United States of America, and Canada. This could skew our data collected on patients’ perceptions towards Western-centric ideals, underrepresenting perceptions more commonly seen in other areas of the world.
Moreover, whilst this study was intended to analyse the wide range of current literature on concepts of dignity, our review was limited by a lack of clear reporting of current dignity preserving measures nor of due consideration of resource limitations in a wide array of practices.
We also acknowledge that whilst taking into account the limited resources and availability of the research and experts teams in this review limiting the scope of this SSR in SEBA to the specified dates to increase the chances of completing the review, could have seen important articles excluded.
This SSR in SEBA reiterates the posit that there are common elements to prevailing concepts of dignity and that a patient’s individualised concept of dignity is a refinement of this concept. In doing so this review underscores the need for a tool and a multidsicplinary approach to dignity conserving care especially at the end of life. As we look forward to continuing our engagement with this this critical aspect of clinical care, we look forward to further insights into this topic that can guide design and pilot a RToP-based as a tool to help HCPs understand their patient’s needs and attend to them in a timely, personalised, and appropriate manner.
Availability of data and materials
All data generated or analysed during this review are included in this published article and its supplementary files.
Bolton S. ‘Dimensions of Dignity at Work’2007.
McCrudden C. Human dignity. Elgar Encyclopedia of Human Rights: Edward Elgar Publishing Limited; 2022.
Hodgkiss P. Social Thought and Rival Claims to the Moral Ideal of Dignity: Anthem Press; 2018.
Pullman D. Human Dignity, Narrative Integrity, and Ethical Decision Making at the End of Life. J Palliat Care. 2004;20(3):133.
Jacelon C, Connelly T, Brown R, Proulx K, Vo T. A concept analysis of dignity for older adults. J Adv Nurs. 2004;48(1):76–83.
Street AF, Kissane DW. Constructions of dignity in end-of-life care. J Palliat Care. 2001;17(2):93–101.
Chochinov HM, Krisjanson LJ, Hack TF, Hassard T, McClement S, Harlos M. Dignity in the Terminally Ill: Revisited. J Palliat Med. 2006;9(3):666–72.
Deshpande AD, Thompson VLS, Vaughn KP, Kreuter MW. The use of sociocultural constructs in cancer screening research among African Americans. Cancer Control. 2009;16(3):256–65.
Horn R, Kerasidou A. The concept of dignity and its use in end-of-life debates in England and France. Camb Q Healthc Ethics. 2016;25(3):404–13.
Leget C. Analyzing dignity: A perspective from the ethics of care. Med Health Care Philos. 2013;16(4):945–52.
Krishna LK, Alsuwaigh R, Miti PT, Wei SS, Ling KH, Manoharan D. The influence of the family in conceptions of personhood in the palliative care setting in Singapore and its influence upon decision making. Am J Hosp Palliat Care. 2014;31(6):645–54.
Krishna LK. Personhood within the context of sedation at the end of life in Singapore. BMJ Case Rep. 2013;2013.
Ong EK, Krishna LK, Neo PSH. The sociocultural and ethical issues behind the decision for artificial hydration in a young palliative patient with recurrent intestinal obstruction Ethics & Medicine. An International Journal of Bioethics. 2015;31:39.
Chai HZ, Krishna LK, Wong VH. Feeding: what it means to patients and caregivers and how these views influence Singaporean Chinese caregivers’ decisions to continue feeding at the end of life. Am J Hosp Palliat Care. 2014;31(2):166–71.
Macklin R. Dignity is a useless concept. British Medical Journal Publishing Group; 2003. p. 1419–20.
Chiam M, Ho CY, Quah E, Chua KZY, Ng CWH, Lim EG, et al. Changing self-concept in the time of COVID-19: a close look at physician reflections on social media. Philos Ethics Humanit Med. 2022;17(1):1–11.
Zhou JX, Goh C, Chiam M, Krishna LKR. Painting and Poetry From a Bereaved Family and the Caring Physician. Journal of Pain and Symptom Management. 2022.
Ho ZJM, Krishna LKR, Yee CPA. Chinese familial tradition and Western influence: a case study in Singapore on decision making at the end of life. J Pain Symptom Manage. 2010;40(6):932–7.
Foo WT, Zheng Y, Kwee AK, Yang GM, Krishna L. Factors considered in end-of-life care decision making by health care professionals. American Journal of Hospice and Palliative Medicine®. 2013;30(4):354–8.
Ho ZJM, Krishna LKR, Goh C, Yee CPA. The physician–patient relationship in treatment decision making at the end of life: A pilot study of cancer patients in a Southeast Asian society. Palliat Support Care. 2013;11(1):13–9.
Chong JA, Quah YL, Yang GM, Menon S, Krishna LKR. Patient and family involvement in decision making for management of cancer patients at a centre in Singapore. BMJ Support Palliat Care. 2015;5(4):420–6.
Radha Krishna LK, Alsuwaigh R. Understanding the fluid nature of personhood - the ring theory of personhood. Bioethics. 2015;29(3):171–81.
Jacobson N. A taxonomy of dignity: a grounded theory study. BMC Int Health Hum Rights. 2009;9(1):1–9.
Wei SS, Krishna LKR. RESPECTING THE WISHES OF INCAPACITATED PATIENTS AT THE END OF LIFE. Ethics & Medicine: An International Journal of Bioethics. 2016;32(1).
Lee RJY, Sim DSW, Tay K, Menon S, Kanesvaran R, Krishna L. Perceptions of quality-of-life advocates in a Southeast Asian Society. Diversity and Equality in Health and Care. 2017;14(2):69–75.
Loh AZH, Tan JSY, Jinxuan T, Lyn TY, Krishna LKR, Goh CR. Place of care at end of life: what factors are associated with patients’ and their family members’ preferences? American Journal of Hospice and Palliative Medicine®. 2016;33(7):669–77.
Radha Krishna LK, Murugam V, Quah DSC. The practice of terminal discharge: Is it euthanasia by stealth? Nurs Ethics. 2018;25(8):1030–40.
Krishna LKR, Watkinson DS, Beng NL. Limits to relational autonomy—the Singaporean experience. Nurs Ethics. 2015;22(3):331–40.
Krishna L, Shirlynn H. Reapplying the" Argument of Preferable Alternative" within the Context of Physician-Assisted Suicide and Palliative Sedation. Asian Bioethics Review. 2015;7(1):62–80.
Krishna LKR, Menon S, Kanesvaran R. Applying the welfare model to at-own-risk discharges. Nurs Ethics. 2017;24(5):525–37.
Krishna L. Palliative care imperative: A framework for holistic and inclusive palliative care. Ethics and Medicine. 2013;29:41–61.
Krishna L, Tay J, Watkinson D, Yee A. Advancing a Welfare-Based Model in Medical Decision. Asian Bioethics Review. 2015;7:306–20.
Ying PT, Krishna LK, Peng AYC. A Palliative Care Model for the Elucidation of Intention within the Multi-Disciplinary Team (MEI). Asian Bioethics Review. 2015;7(4):359–70.
Ho S, Krishna LK. Artificial hydration at the end of life–treating the patient, family or physician. Ann Acad Med Singapore. 2016;44(12):558–60.
Krishna LK. Decision-making at the end of life: A Singaporean perspective. Asian Bioethics Review. 2011;3(2):118–26.
Krishna L. Nasogastric feeding at the end of life: A virtue ethics approach. Nurs Ethics. 2011;18(4):485–94.
Krishna LKR. The position of the family of palliative care patients within the decision-making process at the end of life in Singapore. Ethics & Medicine. 2011;27(3):183.
Krishna L, Chin J. Palliative sedation within the duty of palliative care within the Singaporean clinical context. Asian Bioethics Review. 2011;3(3):207–15.
Krishna LR. Best interests determination within the Singapore context. Nurs Ethics. 2012;19(6):787–99.
Kuek JTY, Ngiam LXL, Kamal NHA, Chia JL, Chan NPX, Abdurrahman ABHM, et al. The impact of caring for dying patients in intensive care units on a physician’s personhood: a systematic scoping review. 2020;15(1):1–16.
Ho CY, Kow CS, Chia CHJ, Low JY, Lai YHM, Lauw S-K, et al. The impact of death and dying on the personhood of medical students: a systematic scoping review. BMC Med Educ. 2020;20(1):1–16.
Huang H, Toh RQE, Chiang CLL, Thenpandiyan AA, Vig PS, Lee RWL, et al. Impact of Dying Neonates on Doctors' and Nurses' Personhood: A Systematic Scoping Review. Journal of pain and symptom management. 2021.
Vig PS, Lim JY, Lee RWL, Huang H, Tan XH, Lim WQ, et al. Parental bereavement–impact of death of neonates and children under 12 years on personhood of parents: a systematic scoping review. BMC Palliat Care. 2021;20(1):1–17.
Chan NPX, Chia JL, Ho CY, Ngiam LXL, Kuek JTY, Ahmad Kamal NHB, et al. Extending the Ring Theory of Personhood to the Care of Dying Patients in Intensive Care Units. Asian bioethics review. 2022;14(1):71–86.
Kow CS, Teo YH, Teo YN, Chua KZY, Quah ELY, Kamal NHBA, et al. A systematic scoping review of ethical issues in mentoring in medical schools. BMC Med Educ. 2020;20(1):1–10.
Ngiam LXL, Ong YT, Ng JX, Kuek JTY, Chia JL, Chan NPX, et al. Impact of Caring for Terminally Ill Children on Physicians: A Systematic Scoping Review. Am J Hosp Palliat Care. 2020:1049909120950301.
Krishna LKR, Tan LHE, Ong YT, Tay KT, Hee JM, Chiam M, et al. Enhancing Mentoring in Palliative Care: An Evidence Based Mentoring Framework. J Med Educ Curric Dev. 2020;7:2382120520957649.
Bok C, Ng CH, Koh JWH, Ong ZH, Ghazali HZB, Tan LHE, et al. Interprofessional communication (IPC) for medical students: a scoping review. BMC Med Educ. 2020;20(1):372.
Chia EWY, Huang H, Goh S, Peries MT, Lee CCY, Tan LHE, et al. A Systematic Scoping Review of Teaching and Evaluating Communications in The Intensive Care Unit. The Asia-Pacific Scholar. In Press.
Hong DZ, Lim AJS, Tan R, Ong YT, Pisupati A, Chong EJX, et al. A Systematic Scoping Review on Portfolios of Medical Educators. J Med Educ Curric Dev. 2021;8:23821205211000356.
Goh S, Wong RSM, Quah ELY, Chua KZY, Lim WQ, Ng ADR, et al. Mentoring in palliative medicine in the time of covid-19: a systematic scoping review. BMC Med Educ. 2022;22(1):1–15.
Ng YX, Koh ZYK, Yap HW, Tay KT, Tan XH, Ong YT, et al. Assessing mentoring: A scoping review of mentoring assessment tools in internal medicine between 1990 and 2019. PLoS ONE. 2020;15(5): e0232511.
Bousquet J, Schunemann HJ, Samolinski B, Demoly P, Baena-Cagnani CE, Bachert C, et al. Allergic Rhinitis and its Impact on Asthma (ARIA): achievements in 10 years and future needs. J Allergy Clin Immunol. 2012;130(5):1049–62.
Bok C, Ng CH, Koh JWH, Ong ZH, Ghazali HZB, Tan LHE, et al. Interprofessional communication (IPC) for medical students: a scoping review. BMC Med Educ. 2020;20(1):372.
Nur Haidah Ahmad Kamal LHET, Ruth Si Man Wong, Ryan Rui Song Ong, Ryan, Ern Wei Seow EKYL, Zheng Hui Mah, Min Chiam, Annelissa Mien Chew Chin, Jamie Xuelian Zhou, Gillian Li Gek Phua, Eng Koon Ong, Jin Wei Kwekc, Kiley Wei-Jen Loh and, Krishna LKR. Enhancing education in Palliative Medicine: the role of Systematic Scoping Reviews. Palliative Medicine & Care: Open Access. 2020;7(1):1–11.
Ryan Rui Song Ong REWS, Ruth Si Man Wong. A Systematic Scoping Review of Narrative Reviews in Palliative Medicine Education. Palliative Medicine & Care: Open Access. 2020;7(1):1–22.
Zheng Hui Mah RSMW, Ryan Ern Wei Seow Eleanor Kei Ying Loh, Nur Haidah, Ahmad Kamal RRSO, Lorraine Hui En Tan, Min Chiam, Annelissa Mien Chew Chin,, Jamie Xuelian Zhou GLGP, Yoke-Lim Soong, Jin Wei Kwek, and Lalit Kumar Radha Krishna. A Systematic Scoping Review of Systematic Reviews in Palliative Medicine Education. Palliative Medicine & Care: Open Access. 2020;7(1):1–12.
Popay J, Roberts H, Sowden A, Petticrew M, Arai L, Rodgers M, et al. Guidance on the conduct of narrative synthesis in systematic reviews. A product from the ESRC methods programme Version. 2006;1: b92.
Pring R. The ‘False Dualism’ of Educational Research. J Philos Educ. 2000;34(2):247–60.
Crotty M. The foundations of social research: Meaning and perspective in the research process: Sage; 1998 Oct 15.
Ford DW, Downey L, Engelberg R, Back AL, Curtis JR. Discussing religion and spirituality is an advanced communication skill: an exploratory structural equation model of physician trainee self-ratings. J Palliat Med. 2012;15(1):63–70.
Schick-Makaroff K, MacDonald M, Plummer M, Burgess J, Neander W. What synthesis methodology should I use? A review and analysis of approaches to research synthesis. AIMS public health. 2016;3(1):172.
Peters MD, Godfrey CM, McInerney P, Soares CB, Khalil H, Parker D. The Joanna Briggs Institute reviewers' manual 2015: methodology for JBI scoping reviews. 2015.
Osama T, Brindley D, Majeed A, Murray KA, Shah H, Toumazos M, et al. Teaching the relationship between health and climate change: a systematic scoping review protocol. BMJ Open. 2018;8(5): e020330.
Pham MT, Rajic A, Greig JD, Sargeant JM, Papadopoulos A, McEwen SA. A scoping review of scoping reviews: advancing the approach and enhancing the consistency. Research synthesis methods. 2014;5(4):371–85.
Sandelowski M, Barroso J. Handbook for synthesizing qualitative research: Springer Publishing Company; 2006.
Wen Jie Chua CWSC, Fion Qian Hui Lee, Eugene Yong Hian Koh, Ying Pin Toh, Stephen Mason, Lalit Kumar Radha Krishna. Structuring Mentoring in Medicine and Surgery. A Systematic Scoping Review of Mentoring Programs Between 2000 and 2019. Journal of Continuing Education in the Health Professions. 2020;40(3):158–68.
Yong Xiang Ng ZYKK, Hong Wei Yap, Kuang Teck Tay, Xiu Hui Tan, Yun Ting Ong, Lorraine Hui En Tan, Annelissa Mien Chew Chin, Ying Pin Toh, Sushma Shivananda, Scott Compton, Stephen Mason, Ravindran Kanesvaran, Lalit Krishna. Assessing mentoring: A scoping review of mentoring assessment tools in internal medicine between 1990 and 2019. . PLOS ONE. 2020;15(5):e0232511.
Peters MD, Godfrey CM, Khalil H, McInerney P, Parker D, Soares CB. Guidance for conducting systematic scoping reviews. Int J Evid Based Healthc. 2015;13(3):141–6.
Sambunjak D, Straus SE, Marusic A. A systematic review of qualitative research on the meaning and characteristics of mentoring in academic medicine. J Gen Intern Med. 2010;25(1):72–8.
Wong G, Greenhalgh T, Westhorp G, Buckingham J, Pawson R. RAMESES publication standards: meta-narrative reviews. BMC Med. 2013;11(1):20.
Braun V, Clarke V. Using thematic analysis in psychology. Qual Res Psychol. 2006;3(2):77–101.
Cassol H, Pétré B, Degrange S, Martial C, Charland-Verville V, Lallier F, et al. Qualitative thematic analysis of the phenomenology of near-death experiences. PLoS ONE. 2018;13(2): e0193001.
Hsieh H-F, Shannon SE. Three Approaches to Qualitative Content Analysis. Qual Health Res. 2005;15(9):1277–88.
Chochinov HM. Dignity-conserving care: A new model for pallative care: Helping the patient feel valued. JAMA. 2002;287(17):2253–60.
France EF, Uny I, Ring N, Turley RL, Maxwell M, Duncan EAS, et al. A methodological systematic review of meta-ethnography conduct to articulate the complex analytical phases. BMC Med Res Methodol. 2019;19(1):35.
Noblit GW, Hare RD, Hare RD. Meta-ethnography: Synthesizing qualitative studies: sage; 1988.
Leung D. Granting death with dignity: patient, family and professional perspectives. Int J Palliat Nurs. 2007;13(4):170–4.
Rodríguez-Prat A, Balaguer A, Booth A, Monforte-Royo C. Understanding patients' experiences of the wish to hasten death: An updated and expanded systematic review and meta-ethnography. BMJ Open. 2017;7(9).
Bylund-Grenklo T, Werkander-Harstäde C, Sandgren A, Benzein E, Östlund U. Dignity in life and care: The perspectives of Swedish patients in a palliative care context. Int J Palliat Nurs. 2019;25(4):193–201.
Pleschberger S. Dignity and the challenge of dying in nursing homes: The residents’ view. Age Ageing. 2007;36(2):197–202.
Duarte Enes SP. An exploration of dignity in palliative care. Palliat Med. 2003;17(3):263–9.
Rodriguez-Prat A, Monforte-Royo C, Porta-Sales J, Escribano X, Balaguer A. Patient perspectives of dignity, autonomy and control at the end of life: Systematic review and meta-ethnography. PLoS ONE. 2016;11(3).
Parpa E, Kostopoulou S, Tsilika E, Galanos A, Katsaragakis S, Mystakidou K. Psychometric properties of the Greek version of the Patient Dignity Inventory in advanced cancer patients. J Pain Symptom Manage. 2017;54(3):376–82.
Macdonald D. Beyond, “death with dignity”: A hospice vignette. Am J Hosp Palliat Med. 2000;17(2):78–9.
Albers G, Pasman HR, Rurup ML, de Vet HC, Onwuteaka-Philipsen BD. Analysis of the construct of dignity and content validity of the patient dignity inventory. Health Qual Life Outcomes. 2011;9:45.
van Gennip IE, Pasman HRW, Oosterveld-Vlug MG, Willems DL, Onwuteaka-Philipsen BD. The development of a model of dignity in illness based on qualitative interviews with seriously ill patients. Int J Nurs Stud. 2013;50(8):1080–9.
Bruun Lorentsen V, Nåden D, Sæteren B. The meaning of dignity when the patients’ bodies are falling apart. Nurs Open. 2019;6(3):1163–70.
Gerry EM. Privacy and dignity in a hospice environment - The development of a clinical audit. Int J Palliat Nurs. 2011;17(2):92–8.
Staats K, Grov EK, Husebo BS, Tranvag O. Dignity and loss of dignity: Experiences of older women living with incurable cancer at home. Health Care for Women International. 2020:No-Specified.
Dening KH, Jones L, Sampson EL. Preferences for end-of-life care: A nominal group study of people with dementia and their family carers. Palliat Med. 2013;27(5):409–17.
Choo PY, Tan-Ho G, Dutta O, Patinadan PV, Ho AHY. Reciprocal Dynamics of Dignity in End-of-Life Care: A Multiperspective Systematic Review of Qualitative and Mixed Methods Research. Am J Hosp Palliat Med. 2020;37(5):385–98.
Östlund U, Blomberg K, Söderman A, Werkander Harstäde C. How to conserve dignity in palliative care: Suggestions from older patients, significant others, and healthcare professionals in Swedish municipal care. BMC Palliative Care. 2019;18(1).
Bovero A, Botto R, Adriano B, Opezzo M, Tesio V, Torta R. Exploring demoralization in end-of-life cancer patients: Prevalence, latent dimensions, and associations with other psychosocial variables. Palliat Support Care. 2019;17(5):596–603.
Lee GL, Ow R, Akhileswaran R, Goh CR. Exploring the experience of dignified palliative care in patients with advanced cancer and families: A feasibility study in Singapore. Progress in Palliative Care. 2013;21(3):131–9.
Tracy MF, Skillings K. Upholding dignity in hospitalized elders. Crit Care Nurs Clin North Am. 2007;19(3):303–12.
Rodríguez-Prat A, van Leeuwen E. Assumptions and moral understanding of the wish to hasten death: a philosophical review of qualitative studies. Med Health Care Philos. 2018;21(1):63–75.
Balducci L. Death and dying: What the patient wants. Annals of Oncology. 2012;23(SUPPL.3):56–61.
Franco ME, Salvetti MG, Donato SCT, Carvalho RT, Franck EM. Perception of dignity of patients in palliative care. Texto e Contexto Enfermagem. 2019;28.
Rudilla D, Oliver A, Galiana L, Barreto P. A new measure of home care patients’ dignity at the end of life: The Palliative Patients’ Dignity Scale (PPDS). Palliat Support Care. 2016;14(2):99–108.
Hughes A, Davies B, Gudmundsdottir M. “Can you give me respect?” Experiences of the urban poor on a dedicated AIDS nursing home unit. JANAC. 2008;19(5):342–56.
Missel M, Bergenholtz HM. The Understanding of Dignity Among In-Hospital Patients Living With Incurable Esophageal Cancer. Cancer Nurs. 2020.
Franklin L, Ternestedt B, Nordenfelt L. Views on dignity of elderly nursing home residents. Nurs Ethics. 2006;13(2):130–46.
Chochinov HM, Hack T, Hassard T, Kristjanson LJ, McClement S, Harlos M. Dignity in the terminally ill: A cross-sectional, cohort study. The Lancet. 2002;360(9350):2026–30.
Bovero A, Sedghi NA, Opezzo M, Botto R, Pinto M, Ieraci V, et al. Dignity-related existential distress in end-of-life cancer patients: Prevalence, underlying factors, and associated coping strategies. Psychooncology. 2018;27(11):2631–7.
Laursen L, Schønau MN, Bergenholtz HM, Siemsen M, Christensen M, Missel M. Table in the corner: A qualitative study of life situation and perspectives of the everyday lives of oesophageal cancer patients in palliative care. BMC Palliative Care. 2019;18(1).
Huang HS, Zeng TY, Mao J, Liu XH. The Understanding of Death in Terminally Ill Cancer Patients in China: An Initial Study. Camb Q Healthc Ethics. 2018;27(3):421–30.
Hall S, Davies JM, Gao W, Higginson IJ. Patterns of dignity-related distress at the end of life: A cross-sectional study of patients with advanced cancer and care home residents. Palliat Med. 2014;28(9):1118–27.
McDermott P. Patient dignity question: Feasible, dignity-conserving intervention in a rural hospice. Can Fam Physician. 2019;65(11):812–9.
Vlug MG, De Vet HCW, Pasman HRW, Rurup ML, Onwuteaka-Philipsen BD. The development of an instrument to measure factors that influence self-perceived dignity. J Palliat Med. 2011;14(5):578–86.
Volker DL, Kahn D, Penticuff JH. Patient control and end-of-life care part II: the patient perspective. Oncol Nurs Forum. 2004;31(5):954–60.
Bovero A, Sedghi NA, Botto R, Tosi C, Ieraci V, Torta R. Dignity in cancer patients with a life expectancy of a few weeks. Implementation of the factor structure of the Patient Dignity Inventory and dignity assessment for a patient-centered clinical intervention: A cross-sectional study. Palliative and Supportive Care. 2018;16(6):648–55.
Aoun S, Deas K, Skett K. Older people living alone at home with terminal cancer. Eur J Cancer Care. 2016;25(3):356–64.
Kostopoulou S, Parpa E, Tsilika E, Katsaragakis S, Papazoglou I, Zygogianni A, et al. Advanced cancer patients’ perceptions of dignity: The impact of psychologically distressing symptoms and preparatory grief. J Palliat Care. 2018;33(2):88–94.
Hack TF, McClement SE, Chochinov HM, Cann BJ, Hassard TH, Kristjanson LJ, et al. Learning from dying patients during their final days: Life reflections gleaned from dignity therapy. Palliat Med. 2010;24(7):715–23.
Aoun S, Kristjanson LJ, Oldham L, Currow D. A qualitative investigation of the palliative care needs of terminally ill people who live alone. Collegian. 2008;15(1):3–9.
Hall S, Goddard C, Opio D, Speck P, Higginson IJ. Feasibility, acceptability and potential effectiveness of Dignity Therapy for older people in care homes: A phase II randomized controlled trial of a brief palliative care psychotherapy. Palliat Med. 2012;26(5):703–12.
Chochinov HM, Johnston W, McClement SE, Hack TF, Dufault B, Enns M, et al. Dignity and distress towards the end of life across four non-cancer populations. PLoS ONE. 2016;11(1).
Chochinov HM, Hack T, Hassard T, Kristjanson LJ, McClement S, Harlos M. Dignity and Psychotherapeutic Considerations in End-of-Life Care. J Palliat Care. 2004;20(3):134–42.
Iani L, De Vincenzo F, Maruelli A, Chochinov HM, Ragghianti M, Durante S, et al. Dignity Therapy Helps Terminally Ill Patients Maintain a Sense of Peace: Early Results of a Randomized Controlled Trial. Frontiers in Psychology. 2020;11.
Hammami MM, Al Gaai E, Hammami S, Attala S. Exploring end of life priorities in Saudi males: usefulness of Q-methodology. BMC Palliat Care. 2015;14:66.
de Voogd X, Oosterveld-Vlug MG, Torensma M, Onwuteaka-Philipsen BD, Willems DL, Suurmond JL. A dignified last phase of life for patients with a migration background: A qualitative study. Palliat Med. 2020;34(10):1385–92.
Hall S, Chochinov H, Harding R, Murray S, Richardson A, Higginson IJ. A Phase II randomised controlled trial assessing the feasibility, acceptability and potential effectiveness of Dignity Therapy for older people in care homes: Study protocol. BMC Geriatrics. 2009;9(1).
Ho AH, Leung PP, Tse DM, Pang SM, Chochinov HM, Neimeyer RA, et al. Dignity amidst liminality: healing within suffering among Chinese terminal cancer patients. Death Stud. 2013;37(10):953–70.
Ke L-S, Huang X, Hu W-Y, O’Connor M, Lee S. Experiences and perspectives of older people regarding advance care planning: A meta-synthesis of qualitative studies. Palliat Med. 2017;31(5):394–405.
Dobratz MC. “All my saints are within me”: Expressions of end-of-life spirituality. Palliat Support Care. 2013;11(3):191–8.
Clarke DM. Growing old and getting sick: Maintaining a positive spirit at the end of life. Aust J Rural Health. 2007;15(3):148–54.
Albers G, Pasman HR, Deliens L, de Vet HC, Onwuteaka-Philipsen BD. Does health status affect perceptions of factors influencing dignity at the end of life? J Pain Symptom Manage. 2013;45(6):1030–8.
Oosterveld-Vlug MG, Pasman HRW, Van Gennip IE, De Vet HCW, Onwuteaka-Philipsen BD. Assessing the validity and intraobserver agreement of the MIDAM-LTC; An instrument measuring factors that influence personal dignity in long-term care facilities. Palliat Med. 2014;28(6):589.
Wang L, Wei Y, Xue L, Guo Q, Liu W. Dignity and its influencing factors in patients with cancer in North China: A cross-sectional study. Curr Oncol. 2019;26(2):e188–93.
Hall S, Goddard C, Martin P, Opio D, Speck P. Exploring the impact of dignity therapy on distressed patients with advanced cancer: Three case studies. Psychooncology. 2013;22(8):1748–52.
Mah L, Grief C, Grossman D, Rootenberg M. Assessment of patient dignity in geriatric palliative care. J Am Geriatr Soc. 2012;60(11):2178–80.
Coulehan J. “They wouldn’t pay attention”: Death without dignity. Am J Hosp Palliat Med. 2005;22(5):339–43.
Zaki-Nejad M, Nikbakht-Nasrabadi A, Manookian A, Shamshiri A. The effect of dignity therapy on the quality of life of patients with cancer receiving palliative care. Iran J Nurs Midwifery Res. 2020;25(4):286–90.
Waskul DD, van der Riet P. The abject embodiment of cancer patients: Dignity, selfhood, and the grotesque body. Symb Interact. 2002;25(4):487–513.
Hall S, Edmonds P, Harding R, Chochinov H, Higginson IJ. Assessing the feasibility, acceptability and potential effectiveness of dignity therapy for people with advanced cancer referred to a hospital-based palliative care team: Study protocol. BMC Palliative Care. 2009;8.
Esteves Franco M, de Góes Salvetti M, Teixeira Donato SC, Tavares de Carvalho R, Franck EM. PERCEPTION OF DIGNITY OF PATIENTS IN PALLIATIVE CARE. Texto & Contexto Enfermagem. 2019;28:1–15.
Lagarrigue A, Mongiatti M, Bayle P, Telmon N, Rougé D. Deprivation of liberty and end of life: Does die with dignity mean to die free? Medecine Palliative. 2014;13(4):200–6.
Watanabe K, MacLeod R. Care for dying patients with primary malignant brain tumor - Respecting dignity. Neurol Med Chir. 2005;45(12):657–9.
Chochinov HM, Hack T, McClement S, Kristjanson L, Harlos M. Dignity in the terminally ill: A developing empirical model. Soc Sci Med. 2002;54(3):433–43.
Bhutia KD, T L, Devi ES. Beliefs, Preferences and Practices of End of Life Care among Elderly. Medico-Legal Update. 2019;19(2):53–6.
Fernández‐Sola C, Granero‐Molina J, Díaz‐Cortés MdM, Jiménez‐López FR, Roman‐López P, Saez‐Molina E, et al. Characterization, conservation and loss of dignity at the end‐of‐ life in the emergency department. A qualitative protocol. Journal of Advanced Nursing (John Wiley & Sons, Inc). 2018;74(6):1392–401.
Gysels M, Reilly C, Jolley C, Pannell C, Spoorendonk F, Bellas H, et al. Dignity through integrated symptom management: Lessons from the breathlessness support service. Palliat Med. 2014;28(6):692.
Lin C-P, Cheng S-Y, Mori M, Suh S-Y, Chan HY-L, Martina D, et al. 2019 Taipei Declaration on Advance Care Planning: A Cultural Adaptation of End-of-Life Care Discussion. New Rochelle, New York: Mary Ann Liebert, Inc.; 2019. p. 1175–7.
Martins Pereira S, Pasman HR, van der Heide A, van Delden JJ, Onwuteaka-Philipsen BD. Old age and forgoing treatment: a nationwide mortality follow-back study in the Netherlands. J Med Ethics. 2015;41(9):766–70.
Beck A, Cottingham AH, Stutz PV, Gruber R, Bernat JK, Helft PR, et al. Abbreviated dignity therapy for adults with advanced-stage cancer and their family caregivers: Qualitative analysis of a pilot study. Palliat Support Care. 2019;17(3):262–8.
McClement SE, Chochinov HM, Hack TF, Kristjanson LJ, Harlos M. Dignity-conserving care: application of research findings to practice. Int J Palliat Nurs. 2004;10(4):173–9.
Lawrence RM. Dementia. A personal legacy beyond words. Mental Health, Religion & Culture. 2007;10(6):553–62.
Schryer C, McDougall A, Tait GR, Lingard L. Creating discursive order at the end of life: The Role of Genres in Palliative Care Settings. Writ Commun. 2012;29(2):111–41.
Vehling S, Mehnert A. Symptom burden, loss of dignity, and demoralization in patients with cancer: A mediation model. Psychooncology. 2014;23(3):283–90.
Volker DL, Kahn D, Penticuff JH. Patient control and end-of-life care part II: the advanced practice nurse perspective. Oncol Nurs Forum. 2004;31(5):954–60.
Van Gennip IE, Pasman R, Oosterveld-Vlug M, Willems D, Onwuteaka-Philipsen B. Changes in sense of dignity over the course of illness: A longitudinal study into the perspectives of seriously ill patients. Palliat Med. 2014;28(6):674–5.
Bernat JK, Helft PR, Wilhelm LR, Hook NE, Brown LF, Althouse SK, et al. Piloting an abbreviated dignity therapy intervention using a legacy-building web portal for adults with terminal cancer: a feasibility and acceptability study. Psychooncology. 2015;24(12):1823–5.
Chapple A, Evans J, McPherson A, Payne S. Patients with pancreatic cancer and relatives talk about preferred place of death and what influenced their preferences: a qualitative study. BMJ Support Palliat Care. 2011;1(3):291–5.
Thorley J. Too many die without dignity. Lancet Oncol. 2015;16(7): e315.
Bentley B, O'Connor M, Breen LJ, Kane R. Feasibility, acceptability and potential effectiveness of dignity therapy for family carers of people with motor neurone disease. BMC Palliative Care. 2014;13(1).
Virdun C, Luckett T, Lorenz K, Davidson PM, Phillips J. Dying in the hospital setting: A meta-synthesis identifying the elements of end-of-life care that patients and their families describe as being important. Palliat Med. 2017;31(7):587–601.
Liu X, Liu Z, Cheng Q, Xu N, Liu H, Ying W. Effects of meaning in life and individual characteristics on dignity in patients with advanced cancer in China: a cross-sectional study. Support Care Cancer. 2021;29(5):2319–26.
Chochinov HM, Hack T, Hassard T, Kristjanson LJ, McClement S, Harlos M. Understanding the Will to Live in Patients Nearing Death. Psychosomatics: Journal of Consultation and Liaison Psychiatry. 2005;46(1):7–10.
Guerrero-Torrelles M, Monforte-Royo C, Rodriguez-Prat A, Porta-Sales J, Balaguer A. Understanding meaning in life interventions in patients with advanced disease: A systematic review and realist synthesis. Palliat Med. 2017;31(9):798–813.
Li-Shan K, Xiaoyan H, Wen-Yu H, Margaret OC, Susan L. Experiences and perspectives of older people regarding advance care planning: A meta-synthesis of qualitative studies. Palliat Med. 2017;31(5):394–405.
Dean RAK. Transforming the moment: Humor and laughter in palliative care: University of Manitoba (Canada); 2003.
Meier EA, Gallegos JV, Montross-Thomas LP, Depp CA, Irwin SA, Jeste DV. Defining a good death (successful dying): Literature review and a call for research and public dialogue. Am J Geriatr Psychiatry. 2016;24(4):261–71.
Lindström I, Gaston-Johansson F, Danielson E. Patients’ participation in end-of-life care: relations to different variables as documented in the patients’ records. Palliat Support Care. 2010;8(3):247–53.
Passik SD, Kirsh KL, Leibee S, Kaplan LS, Love C, Napier E, et al. A feasibility study of dignity psychotherapy delivered via telemedicine. Palliat Support Care. 2004;2(2):149–55.
Sneesby L. Home is where I want to die: Kelly’s journey. Contemp Nurse. 2014;46(2):251–3.
Mah L, Grossman D, Grief C, Rootenberg M. Association between patient dignity and anxiety in geriatric palliative care. Palliat Med. 2013;27(5):478–9.
de Oliveira SG, Pacheco STA, Nunes MDR, Caldas CP, da Cunha AL, Peres PLP. Bioethical aspects of health care provided to older adults at the end of their lives. Revista Enfermagem. 2020;28:1–9.
Brennan F. ‘To die with dignity’: an update on Palliative Care. Intern Med J. 2017;47(8):865–71.
Alvargonzález D. Alzheimer’s disease and euthanasia. Journal of Aging Studies. 2012;26(4):377–85.
Hirai K, Miyashita M, Morita T, Sanjo M, Uchitomi Y. Good Death in Japanese Cancer Care: A Qualitative Study. J Pain Symptom Manage. 2006;31(2):140–7.
Vosit-Steller J, Swinkin J, McCabe K. PERCEPTION OF DIGNITY IN OLDER PEOPLE AND AT THE END OF LIFE. End of Life Journal. 2013;3(2):1–7.
Finlay IG. Quality of life to the end. Commun Med. 2005;2(1):91–5.
Robinson EM, Phipps M, Purtilo RB, Tsoumas A, Hamel-Nardozzi M. Complexities in Decision Making for Persons with Disabilities Nearing End of Life. Top Stroke Rehabil. 2006;13(4):54–67.
Hemati Z, Ashouri E, AllahBakhshian M, Pourfarzad Z, Shirani F, Safazadeh S, et al. Dying with dignity: A concept analysis. J Clin Nurs. 2016;25(9–10):1218–28.
Kurosu M. Argument on removal of respirator in Japan. Leg Med. 2009;11(SUPPL. 1):S399–400.
Sugarman J. Toward treatment with respect and dignity in the intensive care unit. Narrative inquiry in bioethics. 2015;5(1):1A-4A.
Łabuś-Centek M, Jagielski D, Krajnik M. The meaning of dignity patient question and changes in the approach to this issue of cancer patients during home hospice care. Palliative Medicine in Practice. 2020;14(2):89–100.
Viftrup DT, Hvidt NC, Prinds C. Dignity in end-of-life care at hospice: An action research study. Scandinavian Journal of Caring Sciences. 2020:No-Specified.
Montross L, Winters KD, Irwin SA. Dignity therapy implementation in a community-based hospice setting. J Palliat Med. 2011;14(6):729–34.
Grassi L, Costantini A, Caruso R, Brunetti S, Marchetti P, Sabato S, et al. Dignity and psychosocial-related variables in advanced and nonadvanced cancer patients by using the Patient Dignity Inventory-Italian version. J Pain Symptom Manage. 2017;53(2):279–87.
Chochinov HM, Hassard T, McClement S, Hack T, Kristjanson LJ, Harlos M, et al. The patient dignity inventory: a novel way of measuring dignity-related distress in palliative care. J Pain Symptom Manage. 2008;36(6):559–71.
Alsuwaigh R, Radha Krishna LK. How do english-speaking cancer patients conceptualise personhood? Ann Acad Med Singapore. 2015;44(6):207–17.
Street AF, Wakelin K, Hordern A, Bruce N, Horey D. Dignity and deferral narratives as strategies in facilitated technology-based support groups for people with advanced cancer. Nurs Res Pract. 2012;2012: 647836.
Rudilla D, Galiana L, Oliver A, Barreto P. Comparing counseling and dignity therapies in home care patients: A pilot study. Palliat Support Care. 2016;14(4):321–9.
Dose AM, Hubbard JM, Mansfield AS, McCabe PJ, Krecke CA, Sloan JA. Feasibility and Acceptability of a Dignity Therapy/Life Plan Intervention for Patients With Advanced Cancer. Oncol Nurs Forum. 2017;44(5):E194-e202.
Kestenbaum A, Shields M, James J, Hocker W, Morgan S, Karve S, et al. What impact do chaplains have? A pilot study of spiritual AIM for advanced cancer patients in outpatient palliative care. J Pain Symptom Manage. 2017;54(5):707–14.
Li H-C, Richardson A, Speck P, Armes J. Conceptualizations of dignity at the end of life: Exploring theoretical and cultural congruence with dignity therapy. J Adv Nurs. 2014;70(12):2920–31.
Ben Natan M, Garfinkel D, Shachar I. End-of-life needs as perceived by terminally ill older adult patients, family and staff. Eur J Oncol Nurs. 2010;14(4):299–303.
Gonçalves de Oliveira S, de Araújo Pacheco ST, Rodrigues Nunes MD, Pereira Caldas C, Loureiro da Cunha A, Pereira Peres PL. Bioethical aspects of health care provided to older adults at the end of their lives. Revista Enfermagem UERJ. 2020;28:1–9.
Uwimana J, Struthers P. What is the preferred place of care at the end of life for HIV/AIDS patients in countries affected by civil war and genocide: The case of Rwanda? Progress in Palliative Care. 2008;16(3):129–34.
Bastos Cogo S, Lerch LV. Anticipated directives and living will for terminal patients: an integrative review. Rev Bras Enferm. 2015;68(3):464–74.
Bartlett VL, Finder SG. An Actual Advance in Advance Directives: Moving from Patient Choices to Patient Voices in Advance Care Planning. Asian Bioethics Review. 2018;10(1):21–36.
Korman MB, Ellis J, Moore J, Bilodeau D, Dulmage S, Fitch M, et al. Dignity therapy for patients with brain tumours: qualitative reports from patients, caregivers and practitioners. Ann Palliat Med. 2021;10(1):838–45.
García Pérez AI, Dapueto JJ. Case report of a computer-assisted psychotherapy of a patient with ALS. Int J Psychiatry Med. 2014;48(3):229–33.
Vilalta A, Valls J, Porta J, Vinas J. Evaluation of spiritual needs of patients with advanced cancer in a palliative care unit. J Palliat Med. 2014;17(5):592–600.
Akechi T, Akazawa T, Komori Y, Morita T, Otani H, Shinjo T, et al. Dignity therapy: Preliminary cross-cultural findings regarding implementation among Japanese advanced cancer patients. Palliat Med. 2012;26(5):768–9.
McClement S, Chochinov HM, Hack T, Hassard T, Kristjanson LJ, Harlos M. Dignity therapy: Family member perspectives. J Palliat Med. 2007;10(5):1076–82.
Aoun SM, Chochinov HM, Kristjanson LJ. Dignity therapy for people with motor neuron disease and their family caregivers: A feasibility study. J Palliat Med. 2015;18(1):31–7.
Marchand L. Existential suffering in advanced cancer: The buffering effects of narrative. J Pain Symptom Manage. 2016;51(2):424.
Johns SA. Translating dignity therapy into practice: effects and lessons learned. Omega (Westport). 2013;67(1–2):135–45.
Houmann LJ, Chochinov HM, Kristjanson LJ, Petersen MA, Groenvold M. A prospective evaluation of dignity therapy in advanced cancer patients admitted to palliative care. Palliat Med. 2014;28(5):448–58.
Wirth M. Awareness and dying: The problem of sedating “existential suffering” in palliative care. Ethical Perspectives. 2016;23(2):307–26.
Hack TF, McClement SE, Chochinov HM, Dufault B, Johnston W, Enns MW, et al. Assessing Symptoms, Concerns, and Quality of Life in Noncancer Patients at End of Life: How Concordant Are Patients and Family Proxy Members? Journal of Pain & Symptom Management. 2018;56(2):N.PAG-N.PAG.
Reed DA, Beckman TJ, Wright SM, Levine RB, Kern DE, Cook DA. Predictive validity evidence for medical education research study quality instrument scores: quality of submissions to JGIM’s Medical Education Special Issue. Journal of General Internal Medicine. 2008;23(7):903–7.
Tong A, Sainsbury P, Craig J. Consolidated criteria for reporting qualitative research (COREQ): a 32-item checklist for interviews and focus groups. Int J Qual Health Care. 2007;19(6):349–57.
Haig A, Dozier M. BEME guide no. 3: systematic searching for evidence in medical education--part 2: constructing searches. Medical teacher. 2003;25(5):463–84.
Gordon M, Gibbs T. STORIES statement: publication standards for healthcare education evidence synthesis. BMC Med. 2014;12(1):143.
Lee H, Leung AK-y, Kim YH. Unpacking East–West Differences in the Extent of Self-Enhancement from the Perspective of Face versus Dignity Culture. Social and Personality Psychology Compass. 2014;8.
Hemati Z, Ashouri E, AllahBakhshian M, Pourfarzad Z, Shirani F, Safazadeh S, et al. Dying with dignity: a concept analysis. J Clin Nurs. 2016;25(9–10):1218–28.
The authors would like to dedicate this paper to the late Dr. S Radha Krishna and the late Dr. Cynthia Goh whose advice and ideas were integral to the success of this study.
No funding was received for this review.
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Chua, K.Z.Y., Quah, E.L.Y., Lim, Y.X. et al. A systematic scoping review on patients’ perceptions of dignity. BMC Palliat Care 21, 118 (2022). https://doi.org/10.1186/s12904-022-01004-4