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1.  Assessing the validity and intra-observer agreement of the MIDAM-LTC; an instrument measuring factors that influence personal dignity in long-term care facilities 
Background
Patients who are cared for in long-term care facilities are vulnerable to lose personal dignity. An instrument measuring factors that influence dignity can be used to better target dignity-conserving care to an individual patient, but no such instrument is yet available for the long-term care setting. The aim of this study was to create the Measurement Instrument for Dignity AMsterdam - for Long-Term Care facilities (MIDAM-LTC) and to assess its validity and intra-observer agreement.
Methods
Thirteen items specific for the LTC setting were added to the earlier developed, more general MIDAM. The MIDAM-LTC consisted of 39 symptoms or experiences for which presence as well as influence on dignity were asked, and a single item score for overall personal dignity. Questionnaires containing the MIDAM-LTC were administered face-to-face at two moments (with a 1-week interval) to 95 nursing home residents residing on general medical wards of six nursing homes in the Netherlands. Constructs related to dignity (WHO Well-Being Five Index, quality of life and physical health status) were also measured. Ten residents answered the questions while thinking aloud. Content validity, construct validity and intra-observer agreement were examined.
Results
Nine of the 39 items barely exerted influence on dignity. Eight of them could be omitted from the MIDAM-LTC, because the thinking aloud method revealed sensible explanations for their small influence on dignity. Residents reported that they missed no important items. Hypotheses to support construct validity, about the strength of correlations between on the one hand personal dignity and on the other hand well-being, quality of life or physical health status, were confirmed. On average, 83% of the scores given for each item’s influence on dignity were practically consistent over 1 week, and more than 80% of the residents gave consistent scores for the single item score for overall dignity.
Conclusion
The MIDAM-LTC has good content validity, construct validity and intra-observer agreement. By omitting 8 items from the instrument, a good balance between comprehensiveness and feasibility is realised. The MIDAM-LTC allows researchers to examine the concept of dignity more closely in the LTC setting, and can assist caregivers in providing dignity-conserving care.
doi:10.1186/1477-7525-12-17
PMCID: PMC3930004  PMID: 24512296
Dignity; Measurement instrument; Long-term care; Clinimetrics
2.  Undignifying institutions 
Journal of Medical Ethics  2002;28(6):368-372.
Declarations of the importance of dignity in health care are commonplace in codes of practice and other mission statements, yet these documents never clarify dignity's meaning. Their vague aspirations are compared to comments from staff and patients about opportunities for and barriers against the promotion of dignity in elderly care institutions. These suggest that while nurses and health care assistants have an intuitive understanding of dignity, they either do not or cannot always bring it about in practice. Thus, despite stated intentions to promote dignity, it appears that the circumstances of at least some elderly care institutions cause patients to experience avoidable indignities. Such institutions are "undignifying institutions" because they fail to acknowledge dignity's basic components, focus excessively on quantifiable priorities, and have insufficient resources available to assure consistently dignifying care. As a partial solution, we argue that health workers should be taught to understand and specify the components of dignity, which will better prepare them to challenge undignifying practices and to recognise opportunities for dignity promotion.
doi:10.1136/jme.28.6.368
PMCID: PMC1757106  PMID: 12468656
3.  The meaning and importance of dignified care: findings from a survey of health and social care professionals 
BMC Geriatrics  2013;13:28.
Background
There are well established national and local policies championing the need to provide dignity in care for older people. We have evidence as to what older people and their relatives understand by the term ‘dignified care’ but less insight into the perspectives of staff regarding their understanding of this key policy objective.
Methods
A survey of health and social care professionals across four NHS Trusts in England to investigate how dignified care for older people is understood and delivered. We received 192 questionnaires of the 650 distributed.
Results
Health and social care professionals described the meaning of dignified care in terms of their relationships with patients: ‘respect’ (47%), ‘being treated as an individual’ (40%), ‘being involved in decision making’ (26%) and ‘privacy’ (24%). ‘Being treated as an individual’ and ‘maintaining privacy’ were ranked as the most important components of dignified care. Physical caring tasks such as ‘helping with washing, dressing and feeding’ were rarely described as being part of dignified care and attributed much less importance than the relational components.
Conclusion
Dignity in care is a concept with multiple meanings. Older people and their relatives focus upon the importance of providing physical care when describing what this means to them. Our participants focussed upon the relational aspects of care delivery rather than care itself. Proactive measures are therefore required to ensure that the physical aspects of care are met for all older people receiving care in NHS trusts.
doi:10.1186/1471-2318-13-28
PMCID: PMC3614439  PMID: 23517491
Dignity; Health care professionals; Social care professionals; Nursing; Older people; Ageing; Care; Hands on care
4.  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;9:9.
Background
Although most older people living in nursing homes die there, there is a dearth of robust evaluations of interventions to improve their end-of-life care. Residents usually have multiple health problems making them heavily reliant on staff for their care, which can erode their sense of dignity. Dignity Therapy has been developed to help promote dignity and reduce distress. It comprises a recorded interview, which is transcribed, edited then returned to the patient, who can bequeath it to people of their choosing. Piloting has suggested that Dignity Therapy is beneficial to people dying of cancer and their families. The aims of this study are to assess the feasibility, acceptability and potential effectiveness of Dignity Therapy to reduce psychological and spiritual distress in older people reaching the end of life in care homes, and to pilot the methods for a Phase III RCT.
Methods/design
A randomised controlled open-label trial. Sixty-four residents of care homes for older people are randomly allocated to one of two groups: (i) Intervention (Dignity Therapy offered in addition to any standard care), and (ii) Control group (standard care). Recipients of the "generativity" documents are asked their views on taking part in the study and the therapy. Both quantitative and qualitative outcomes are assessed in face-to-face interviews at baseline and at approximately one and eight weeks after the intervention (equivalent in the control group). The primary outcome is residents' sense of dignity (potential effectiveness) assessed by the Patient Dignity Inventory. Secondary outcomes for residents include depression, hopefulness and quality of life. In view of the relatively small sample size, quantitative analysis is mainly descriptive. The qualitative analysis uses the Framework method.
Discussion
Dignity Therapy is brief, can be done at the bedside and could help both patients and their families. This detailed exploratory research shows if it is feasible to offer Dignity Therapy to residents of care homes, whether it is acceptable to them, their families and care home staff, if it is likely to be effective, and determine whether a Phase III RCT is desirable.
Trial registration
Current Controlled Clinical Trials: ISRCTN37589515
doi:10.1186/1471-2318-9-9
PMCID: PMC2666739  PMID: 19317898
5.  A taxonomy of dignity: a grounded theory study 
Background
This paper has its origins in Jonathan Mann's insight that the experience of dignity may explain the reciprocal relationships between health and human rights. It follows his call for a taxonomy of dignity: "a coherent vocabulary and framework to characterize dignity."
Methods
Grounded theory procedures were use to analyze literature pertaining to dignity and to conduct and analyze 64 semi-structured interviews with persons marginalized by their health or social status, individuals who provide health or social services to these populations, and people working in the field of health and human rights.
Results
The taxonomy presented identifies two main forms of dignity–human dignity and social dignity–and describes several elements of these forms, including the social processes that violate or promote them, the conditions under which such violations and promotions occur, the objects of violation and promotion, and the consequences of dignity violation. Together, these forms and elements point to a theory of dignity as a quality of individuals and collectives that is constituted through interaction and interpretation and structured by conditions pertaining to actors, relationships, settings, and the broader social order.
Conclusion
The taxonomy has several implications for work in health and human rights. It suggests a map to possible points of intervention and provides a language in which to talk about dignity.
doi:10.1186/1472-698X-9-3
PMCID: PMC2656457  PMID: 19239684
6.  Nursing home staff’s views on residents’ dignity: a qualitative interview study 
Background
Maintaining dignity is an important element of end-of-life care and also of the care given in nursing homes. Factors influencing personal dignity have been studied from both nursing home residents’ and staff’s perspective. Little is however known about the way nursing home staff perceive and promote the personal dignity of individual residents in daily practice, or about staff’s experiences with preserving dignity within the nursing home. The aim of this study is to gain more insight in this.
Methods
A qualitative descriptive interview study was designed, in which in-depth interviews were performed with 13 physicians and 15 nurses. They expressed their views on the personal dignity of 30 recently admitted nursing home residents on the general medical wards of four nursing homes in The Netherlands. Interviews were transcribed and analyzed following the principles of thematic analysis.
Results
According to both physicians and nurses, physical impairment and being dependent on others threatened the residents’ dignity. Whether or not this led to a violation of an individual resident’s dignity, depended - in staff’s opinion - on the resident’s ability to show resilience and to keep his/her individuality. Staff mentioned treating residents with respect and taking care of their privacy as most important elements of dignity-conserving care and strived to treat the residents as they would like to be treated themselves. They could often mention aspects that were important for a particular resident’s dignity. But, when asked what they could contribute to a particular resident’s dignity, they often mentioned general aspects of dignity-conserving care, which could apply to most nursing home residents. By attempting to give dignity-conserving care, physicians and nurses often experienced conflicting values in daily care and barriers caused by the lack of resources.
Conclusions
Tailoring dignity-conserving care to an individual nursing home resident appears hard to bring about in daily practice. Both attention to solve contextual barriers within the nursing home as well as more awareness of staff members for their own values, which they take as a reference point in treating residents, is needed to promote personal dignity in the nursing home setting.
doi:10.1186/1472-6963-13-353
PMCID: PMC3850947  PMID: 24041222
Dignity; Elderly care physicians; End-of-life issues; Interviews; Nurses; Nursing home; Older people
7.  Human dignity in the Nazi era: implications for contemporary bioethics 
BMC Medical Ethics  2006;7:2.
Background
The justification for Nazi programs involving involuntary euthanasia, forced sterilisation, eugenics and human experimentation were strongly influenced by views about human dignity. The historical development of these views should be examined today because discussions of human worth and value are integral to medical ethics and bioethics. We should learn lessons from how human dignity came to be so distorted to avoid repetition of similar distortions.
Discussion
Social Darwinism was foremost amongst the philosophies impacting views of human dignity in the decades leading up to Nazi power in Germany. Charles Darwin's evolutionary theory was quickly applied to human beings and social structure. The term 'survival of the fittest' was coined and seen to be applicable to humans.
Belief in the inherent dignity of all humans was rejected by social Darwinists. Influential authors of the day proclaimed that an individual's worth and value were to be determined functionally and materialistically. The popularity of such views ideologically prepared German doctors and nurses to accept Nazi social policies promoting survival of only the fittest humans.
A historical survey reveals five general presuppositions that strongly impacted medical ethics in the Nazi era. These same five beliefs are being promoted in different ways in contemporary bioethical discourse. Ethical controversies surrounding human embryos revolve around determinations of their moral status. Economic pressures force individuals and societies to examine whether some people's lives are no longer worth living. Human dignity is again being seen as a relative trait found in certain humans, not something inherent. These views strongly impact what is taken to be acceptable within medical ethics.
Summary
Five beliefs central to social Darwinism will be examined in light of their influence on current discussions in medical ethics and bioethics.
Acceptance of these during the Nazi era proved destructive to many humans. Their widespread acceptance today would similarly lead to much human death and suffering. A different ethic in needed which views human dignity as inherent to all human individuals.
doi:10.1186/1472-6939-7-2
PMCID: PMC1484488  PMID: 16536874
8.  Multi-Cultural Long Term Care Nurses’ Perceptions of Factors Influencing Patient Dignity at the End of Life 
The goal of this mixed-methods study was to characterize the perceptions of multi-cultural long-term care nurses about patient dignity at the end-of-life (EOL). The study was conducted in a large, urban long-term care (LTC) facility. The participants were forty-five long-term care nurses and 26 terminally ill nursing home patients. Nurses completed an open-ended interview about their perceptions of the concept of dying with dignity and the data were analyzed using grounded theory methods. Main themes identified as promoting patient dignity at the EOL included treating them with respect, helping them prepare for their EOL, promoting shared decision making and providing high quality tenor of care. The nurses’ cultural and religious backgrounds influenced their perceptions of what constitutes dignity-conserving care. Foreign-born nurses stressed the need for end-of-life rituals but this was strikingly absent in the statements of US-born nurses. Foreign-born Catholic nurses stated that the dying experience should not be altered using analgesics to relieve suffering or by attempts to hasten death by forgoing curative therapy or by other means. Both nurses and terminally ill patients completed the Dignity Card-sort Tool (DCT). A comparison of the LTC nurses cohort to the terminally ill patient responses on the DCT revealed that the nurses felt that patient dignity was eroded when her/his wishes were not carried out and when s/he is treated without respect. In contrast, dying LTC patients felt that poor medical care and loss of ability to choose care options to be the most important factors leading to erosion of dignity.
doi:10.1111/jgs.12145
PMCID: PMC3636182  PMID: 23496266
end-of-life; palliative; dignity; multi-cultural; nursing; long term care
9.  Feasibility, Acceptability, and Potential Effectiveness of Dignity Therapy for People with Motor Neurone Disease 
PLoS ONE  2014;9(5):e96888.
Background
Motor neurone disease (MND) practice guidelines suggest developing interventions that will promote hope, meaning, and dignity to alleviate psychological distress, but very little research has been done. This study begins to address this need by exploring the use of dignity therapy with people with MND. Dignity therapy is a brief psychotherapy that promotes hope, meaning and dignity, and enhances the end of life for people with advanced cancer. The aims of this study are to assess the feasibility, acceptability, and potential effectiveness of dignity therapy for people with MND.
Methods/design
This cross-sectional feasibility study used a one-group pre-test post-test design with 29 people diagnosed with MND. Study participants completed the following self-report questionnaires: Herth Hope Index, FACIT-sp, Patient Dignity Inventory, ALS Assessment Questionnaire, ALS Cognitive Behavioural Screen, and a demographic and health history questionnaire. Acceptability was measured with a 25-item feedback questionnaire. Feasibility was assessed by examining the length of time taken to complete dignity therapy and how symptoms common in MND affected the intervention. Generalised linear mixed models and reliable change scores were used to analyse the data.
Results
There were no significant pre-test post-test changes for hopefulness, spirituality or dignity on the group level, but there were changes in hopefulness on the individual level. The results of the feedback questionnaire indicates dignity therapy is highly acceptable to people with MND, who report benefits similar to those in the international randomised controlled trial on dignity therapy, a population who primarily had end-stage cancer. Benefits include better family relationships, improved sense of self and greater acceptance. Dignity therapy with people with MND is feasible if the therapist can overcome time and communication difficulties.
Conclusions
Dignity therapy for people with MND is feasible and acceptable. Further research is warranted to explore its ability to diminish distress.
Trial Registration
www.anzctr.org.au ACTRN12611000410954
doi:10.1371/journal.pone.0096888
PMCID: PMC4016138  PMID: 24816742
10.  Changes in the Personal Dignity of Nursing Home Residents: A Longitudinal Qualitative Interview Study 
PLoS ONE  2013;8(9):e73822.
Background
Most nursing home residents spend the remainder of their life, until death, within a nursing home. As preserving dignity is an important aim of the care given here, insight into the way residents experience their dignity throughout their entire admission period is valuable.
Aim
To investigate if and how nursing home residents’ personal dignity changes over the course of time, and what contributes to this.
Design
A longitudinal qualitative study.
Methods
Multiple in-depth interviews, with an interval of six months, were carried out with 22 purposively sampled nursing home residents of the general medical wards of four nursing homes in The Netherlands. Transcripts were analyzed following the principles of thematic analysis.
Results
From admission onwards, some residents experienced an improved sense of dignity, while others experienced a downward trend, a fluctuating one or no change at all. Two mechanisms were especially important for a nursing home resident to maintain or regain personal dignity: the feeling that one is in control of his life and the feeling that one is regarded as a worthwhile person. The acquirement of both feelings could be supported by 1) finding a way to cope with one’s situation; 2) getting acquainted with the new living structures in the nursing home and therefore feeling more at ease; 3) physical improvement (with or without an electric wheelchair); 4) being socially involved with nursing home staff, other residents and relatives; and 5) being amongst disabled others and therefore less prone to exposures of disrespect from the outer world.
Conclusion
Although the direction in which a resident’s personal dignity develops is also dependent on one’s character and coping capacities, nursing home staff can contribute to dignity by creating optimal conditions to help a nursing home resident recover feelings of control and of being regarded as a worthwhile person.
doi:10.1371/journal.pone.0073822
PMCID: PMC3771937  PMID: 24069235
11.  Dignity Therapy Implementation in a Community-Based Hospice Setting 
Journal of Palliative Medicine  2011;14(6):729-734.
Abstract
Background
Dignity Therapy is a brief, empirically supported, individualized psychotherapy designed to address legacy needs among patients at the end of life. To date, this psychotherapy has not been implemented in a “real-world” community-based hospice setting. This study was designed to offer information about the pragmatic aspects of implementing Dignity Therapy for patients receiving hospice care.
Method
Twenty-seven patients completed Dignity Therapy as part of a clinical service newly offered at a community-based hospice. Referral and enrollment procedures, as well as the logistics of therapy implementation were monitored. Patients' legacy transcripts were also qualitatively analyzed to measure emergent themes.
Results
Patients were most commonly referred by social workers, and on average produced Dignity Therapy legacy transcripts approximately 3000 words/8 pages in length. The mean number of sessions spent with patients was 4, equating to an average of 380 minutes of clinician time per patient. Qualitative analyses revealed the most commonly discussed topics among patients were (in rank order): autobiographical information, love, lessons learned in life, defining roles in vocations or hobbies, accomplishments, character traits, unfinished business, hopes and dreams, catalysts, overcoming challenges, and guidance for others.
Discussion
This was the first study to implement Dignity Therapy in a community sample, with results highlighting the practical aspects of treatment as well as the most common themes discussed by clinical patients in a hospice setting. These findings provide useful data for clinicians or organizational leaders who may consider offering Dignity Therapy in their setting, and offer general insight regarding the legacy topics most frequently discussed by patients near the end of life.
doi:10.1089/jpm.2010.0449
PMCID: PMC3120093  PMID: 21548823
12.  Effective health care for older people resident in care homes: the optimal study protocol for realist review 
Systematic Reviews  2014;3:49.
Background
Care homes in the UK rely on general practice for access to specialist medical and nursing care as well as referral to therapists and secondary care. Service delivery to care homes is highly variable in both quantity and quality. This variability is also evident in the commissioning and organisation of care home-specific services that range from the payment of incentives to general practitioners (GPs) to visit care homes, to the creation of care home specialist teams and outreach services run by geriatricians. No primary studies or systematic reviews have robustly evaluated the impact of these different approaches on organisation and resident-level outcomes. Our aim is to identify factors which may explain the perceived or demonstrated effectiveness of programmes to improve health-related outcomes in older people living in care homes.
Methods/Design
A realist review approach will be used to develop a theoretical understanding of what works when, why and in what circumstances. Elements of service models of interest include those that focus on assessment and management of residents’ health, those that use strategies to encourage closer working between visiting health care providers and care home staff, and those that address system-wide issues about access to assessment and treatment. These will include studies on continence, dignity, and speech and language assessment as well as interventions to promote person centred dementia care, improve strength and mobility, and nutrition. The impact of these interventions and their different mechanisms will be considered in relation to five key outcomes: residents’ medication use, use of out of hours’ services, hospital admissions (including use of Accident and Emergency) and length of hospital stay, costs and user satisfaction. An iterative three-stage approach will be undertaken that is stakeholder-driven and optimises the knowledge and networks of the research team.
Discussion
This realist review will explore why and for whom different approaches to providing health care to residents in care homes improves access to health care in the five areas of interest. It will inform commissioning decisions and be the basis for further research. This systematic review protocol is registered on the PROSPERO database reference number: CRD42014009112.
doi:10.1186/2046-4053-3-49
PMCID: PMC4037277  PMID: 24887325
Residential facilities; Primary care; Older people; Health services; Realist review
13.  The effect of dignity therapy on distress and end-of-life experience in terminally ill patients: a randomised controlled trial 
The lancet oncology  2011;12(8):753-762.
Objectives
Dignity Therapy is a unique, individualized, brief psychotherapy, developed for patients (and their families) living with life threatening or life limiting illness. The purpose of this study was to determine if Dignity Therapy could mitigate distress and/or bolster end-of-life experience for patients nearing death.
Trial Design
Multi-site randomized controlled trial, with patients assigned to Dignity Therapy, Client Centred Care or Standard Palliative Care. Study arm assignment was based on a computer-generated table of random numbers. Blinding was achieved using opaque sealed envelopes, containing allocations that were only opened once consent had been obtained.
Participants
Patients receiving hospital or community (hospice or home) based palliative care, in Winnipeg, New York, or Perth, randomly assigned to, Dignity Therapy [n=108], Client Centered Care [n=107] and Standard Palliative Care (n=111).
Main Outcome Measures
The primary outcome measures included the FACIT Spiritual Well-Being Scale, the Patient Dignity Inventory, the Hospital Anxiety and Depression Scale; items from the Structured Interview for Symptoms and Concerns, the Quality of Life Scale and a modified Edmonton Symptom Assessment Scale. Mean changes between baseline and end of intervention ratings were determined. Secondary outcomes, examining self-report end-of-life experience, consisted of a post-study survey administered across all study arms.
Intervention
Dignity Therapy, a novel, brief psychotherapy, provides patients with life threatening and life limiting illnesses an opportunity to speak about things that matter most to them. These recorded conversations form the basis of a generativity document, which patients can bequeath to individuals of their choosing. Client Centred Care is a supportive psychotherapeutic approach, in which research nurse/therapists guide patients through discussions focusing on here and now issues.
Findings
No significant differences across study arms, between the primary study outcome measures of pre and post distress, were found. However, on the secondary outcomes, comprised of the post study survey, patients reported that Dignity Therapy was significantly more likely to be experienced as helpful (χ2=35.501; p<0.001), improve quality of life (χ2 =14.520; p<0.001), sense of dignity (χ2 =12.655; p=0.002); change how their family sees and appreciates them (χ2 =33.811; p<0.001) and be helpful to their family (χ2=33.864; p<0.001).
Interpretation
Despite the beneficial effects of Dignity Therapy, its ability to mitigate outright distress, such as depression, desire for death or suicidality, has yet to be proven. However, there is currently ample evidence supporting its clinical application for patients nearing death, as a means of enhancing their end-of-life experience.
doi:10.1016/S1470-2045(11)70153-X
PMCID: PMC3185066  PMID: 21741309
14.  Attitudes of Korean adults towards human dignity: A Q methodology approach 
Aim
The aim of this study was to identify the perceived attitudes of Korean adults towards human dignity in order to determine the relationship of human dignity to its social and cultural background.
Methods
The Q methodology research technique was used to explore perceived attitude typology on the basis of the respondents’ ranking order for different statements. A convenience sampling method was used to select 40 Korean adults who were interested in human dignity to create statements. From the questionnaires, in-depth interviews, and a literature review, a total of 158 statements was obtained. The final 34 Q samples were selected from a review by two nursing professors and a Q methodology expert. Moreover, 38 respondents participated as P samples by sorting 34 Q statements on a nine-point normal distribution scale. The data were analyzed by using the QUANL software package.
Results
The following four types of attitudes about human dignity were identified in Korea: a happiness-oriented–self-pursuit type, relationship-oriented–self-recognition type, reflection-oriented–self-unification type, and discrimination-oriented–self-maintenance type.
Conclusions
The results indicate that approaches to developing human dignity education need to take this typology into account and the characteristics of the participants who fall into each category. These results provide general guidelines to understand Korean values for professional practice in various healthcare settings.
doi:10.1111/j.1742-7924.2011.00190.x
PMCID: PMC3712620  PMID: 22583944
attitudes; human dignity; Korean adults; Q methodology
15.  Struggling for existence—Life situation experiences of older persons with mental disorders 
Older persons with mental disorders represent a vulnerable group of people with extensive and complex needs. The older population is rapidly increasing worldwide and, as a result of deinstitutionalization in mental health care, older persons are remaining at home to a greater extent. Although they constitute a large proportion of the population, older persons with mental disorders have been neglected in research as well as in care organizations. As there is little previous knowledge concerning older persons’ experiences of their own situations, this study aimed to illuminate the meaning of the life situation as experienced by older persons with mental disorders (excluding dementia disorders). Interviews were conducted with seven older persons and the text was analyzed using a phenomenological hermeneutical research method, inspired by the philosophy of Paul Ricoeur. “Struggling for existence” emerged as a main theme in the older persons’ narratives, understood as a loss of dignity of identity and involving being troubled and powerless as well as yearning for respect. The older persons fought to master their existence and to be seen for who they are. The study highlights the importance for caregivers, both formal and informal, to avoid focusing on the diagnoses and rather acknowledge the older persons and their lifeworld, be present in the relation and help them rebuild their dignity of identity. This study brings a new understanding about older persons with mental disorders that may help reduce stigma and contribute to planning future mental health care.
doi:10.3402/qhw.v7i0.18422
PMCID: PMC3371755  PMID: 22693537
Aged; gerontology; mental disorders; municipal care of the old; phenomenological hermeneutics; psychiatry
16.  An assessment of the construct validity of the ASCOT measure of social care-related quality of life with older people 
Background
The adult social care outcomes toolkit (ASCOT) includes a preference-weighted measure of social care-related quality of life for use in economic evaluations. ASCOT has eight attributes: personal cleanliness and comfort, food and drink, control over daily life, personal safety, accommodation cleanliness and comfort, social participation and involvement, occupation and dignity. This paper aims to demonstrate the construct validity of the ASCOT attributes.
Methods
A survey of older people receiving publicly-funded home care services was conducted by face-to-face interview in several sites across England. Additional data on variables hypothesised to be related and unrelated to each of the attributes were also collected. Relationships between these variables and the attributes were analysed through chi-squared tests and analysis of variance, as appropriate, to test the construct validity of each attribute.
Results
301 people were interviewed and approximately 10% of responses were given by a proxy respondent. Results suggest that each attribute captured the extent to which respondents exercised choice in how their outcomes were met. There was also evidence for the validity of the control over daily life, occupation, personal cleanliness and comfort, personal safety, accommodation cleanliness and comfort, and social participation and involvement attributes. There was less evidence regarding the validity of the food and drink and dignity attributes, but this may be a consequence of problems finding good data against which to validate these attributes, as well as problems with the distribution of the food and drink item.
Conclusions
This study provides some evidence for the construct validity of the ASCOT attributes and therefore support for ASCOT's use in economic evaluation. It also demonstrated the feasibility of its use among older people, although the need for proxy respondents in some situations suggests that developing a version that is suitable for proxies would be a useful future direction for this work. Validation of the instrument on a sample of younger social care users would also be useful.
doi:10.1186/1477-7525-10-21
PMCID: PMC3305488  PMID: 22325334
social care; quality of life; ASCOT; validity; long-term care
17.  Care for suicidal older people: current clinical–ethical considerations 
Journal of Medical Ethics  2007;33(7):376-381.
This article opens by reviewing the state of the knowledge on the most current worldwide facts about suicide in older people. Next, a number of values that have a role in this problem are considered. Having a clear and current understanding of suicide and of the related self‐held and social values forms the framework for a number of clinical–ethical recommendations for care practice. An important aspect of caring for older people with suicidal tendencies is to determine whether their primary care fosters self‐esteem and affirms their dignity. In addition to providing a timely and appropriate diagnosis and treatment of suicidality, the caregiver is responsible for helping the patient to cope with stressful conditions, and for treating the patient with respect and consideration, thereby supporting the patient's dignity and giving the patient a reason to live. Paying attention to these central points will foster caring contact with suicidal older people.
doi:10.1136/jme.2006.017897
PMCID: PMC2598143  PMID: 17601861
18.  The End-of-Life Phase of High-Grade Glioma Patients: Dying With Dignity? 
The Oncologist  2013;18(2):198-203.
The proportion of high-grade glioma patients dying with dignity as perceived by their relatives is assessed and disease- and care-related factors correlated with dying with dignity in high-grade glioma patients are identified.
Background.
In the end-of-life (EOL) phase, high-grade glioma (HGG) patients have a high symptom burden and often lose independence because of physical and cognitive dysfunction. This might affect the patient's personal dignity. We aimed to (a) assess the proportion of HGG patients dying with dignity as perceived by their relatives and (b) identify disease and care factors correlated with dying with dignity in HGG patients.
Methods.
We approached relatives of a cohort of 155 deceased HGG patients for the study. Participants completed a questionnaire concerning the EOL phase of the patient, covering several subthemes: (a) symptoms and signs, (b) health-related quality of life, (c) decision making, (d) place and quality of EOL care, and (e) dying with dignity.
Results.
Relatives of 81 patients participated and 75% indicated that the patient died with dignity. These patients had fewer communication deficits, experienced fewer transitions between health care settings in the EOL phase, and more frequently died at their preferred place of death. Relatives were more satisfied with the physician providing EOL care and reported that the physician adequately explained treatment options. Multivariate analysis identified satisfaction with the physician, the ability to communicate, and the absence of transitions between settings as most predictive of a dignified death.
Conclusions.
Physicians caring for HGG patients in the EOL phase should timely focus on explaining possible treatment options, because patients experience communication deficits toward death. Physicians should strive to allow patients to die at their preferred place and avoid transitions during the last month of life.
doi:10.1634/theoncologist.2012-0247
PMCID: PMC3579604  PMID: 23335620
High grade glioma; Dignity; End of life; Quality of life; Quality of care
19.  Death with dignity 
Journal of Medical Ethics  2002;28(4):255-257.
The purpose of this article is to develop a conception of death with dignity and to examine whether it is vulnerable to the sort of criticisms that have been made of other conceptions. In this conception "death" is taken to apply to the process of dying; "dignity" is taken to be something that attaches to people because of their personal qualities. In particular, someone lives with dignity if they live well (in accordance with reason, as Aristotle would see it). It follows that health care professionals cannot confer on patients either dignity or death with dignity. They can, however, attempt to ensure that the patient dies without indignity. Indignities are affronts to human dignity, and include such things as serious pain and the exclusion of patients from involvement in decisions about their lives and deaths. This fairly modest conception of death with dignity avoids the traps of being overly subjective or of viewing the sick and helpless as "undignified".
doi:10.1136/jme.28.4.255
PMCID: PMC1733631  PMID: 12161582
20.  Human Dignity as a Component of a Long-Lasting and Widespread Conceptual Construct 
Journal of Bioethical Inquiry  2014;11:201-211.
For some decades, the concept of human dignity has been widely discussed in bioethical literature. Some authors think that this concept is central to questions of respect for human beings, whereas others are very critical of it. It should be noted that, in these debates, dignity is one component of a long-lasting and widespread conceptual construct used to support a stance on the ethical question of the moral status of an action or being. This construct has been used from Modernity onward to condemn slavery and torture as violations of human dignity. In spelling it out, we can come to a better understanding of what “dignity” means and become aware that there exists a quite useful place for this notion in our ethical thought, albeit a modest one.
doi:10.1007/s11673-014-9512-9
PMCID: PMC4061478  PMID: 24752523
Dignity; Intrinsic value; Person; Moral status; Slavery; Torture
21.  Complexity in Non-Pharmacological Caregiving Activities at the End of Life: An International Qualitative Study 
PLoS Medicine  2012;9(2):e1001173.
In a qualitative study reported by Olav Lindqvist and colleagues, the range of nonpharmacological caregiving activities used in the last days of a patient's life are described.
Background
In late-stage palliative cancer care, relief of distress and optimized well-being become primary treatment goals. Great strides have been made in improving and researching pharmacological treatments for symptom relief; however, little systematic knowledge exists about the range of non-pharmacological caregiving activities (NPCAs) staff use in the last days of a patient's life.
Methods and Findings
Within a European Commission Seventh Framework Programme project to optimize research and clinical care in the last days of life for patients with cancer, OPCARE9, we used a free-listing technique to identify the variety of NPCAs performed in the last days of life. Palliative care staff at 16 units in nine countries listed in detail NPCAs they performed over several weeks. In total, 914 statements were analyzed in relation to (a) the character of the statement and (b) the recipient of the NPCA. A substantial portion of NPCAs addressed bodily care and contact with patients and family members, with refraining from bodily care also described as a purposeful caregiving activity. Several forms for communication were described; information and advice was at one end of a continuum, and communicating through nonverbal presence and bodily contact at the other. Rituals surrounding death and dying included not only spiritual/religious issues, but also more subtle existential, legal, and professional rituals. An unexpected and hitherto under-researched area of focus was on creating an aesthetic, safe, and pleasing environment, both at home and in institutional care settings.
Conclusions
Based on these data, we argue that palliative care in the last days of life is multifaceted, with physical, psychological, social, spiritual, and existential care interwoven in caregiving activities. Providing for fundamental human needs close to death appears complex and sophisticated; it is necessary to better distinguish nuances in such caregiving to acknowledge, respect, and further develop end-of-life care.
Please see later in the article for the Editors' Summary
Editors' Summary
Background
End-of-life care is a major public health issue, yet despite the inevitability of death, issues related to death and dying are often taboo, and, if mentioned, are often referred to as “palliative care.” There are detailed definitions of palliative care, but in essence, the purpose of palliative care is to relieve any suffering in patients who are dying from progressive illness and to provide the best possible quality of life for both the patient and his or her family. In order to achieve this aim, both pharmacological and non-pharmacological management is necessary, with the latter taking a central role. Recently, a European Commission Seventh Framework Programme project, OPCARE9, aimed to improve the care of dying patients in Europe and beyond by optimizing research and clinical care for patients with cancer in the last days of their life, especially regarding well-being and comfort as death becomes imminent.
Why Was This Study Done?
There is now a growing literature base in non-pharmacological management at the end of an individual's life, particularly in relation to psychological, ethical, and communication issues as well as family-focused and culturally appropriate care. Despite this progress, there is currently little systematic knowledge in how health workers use such non-pharmacological approaches in their efforts to maximize well-being and comfort in patients experiencing their very last days of life. Therefore, in order to advance knowledge in this important clinical area, in this study the researchers reviewed and identified the variety of non-pharmacological caregiving activities performed by different professionals in the last days and hours of life for patients with cancer (and their families) in palliative care settings in the countries that participated in OPCARE9.
What Did the Researchers Do and Find?
The researchers modified an anthropological approach to collect relevant information in participating European countries—Germany, Italy, the Netherlands, Slovenia, Sweden, Switzerland, and the UK—and Argentina and New Zealand. Staff in palliative care settings generated a list of non-pharmacological caregiving activities after discussion about which interventions and activities they carried out with patients and families during the last days of life. This preliminary list of statements was added to if staff performed a new activity when in contact with patients or the patients' family during the last days of life. The researchers then used computer-assisted qualitative data analysis to code the statements.
Using this methodology, the researchers analyzed 914 statements of caregiving activities from 16 different facilities in nine countries. The greatest number of activities described some type of caregiving for an individual carried out through contact with his or her body, such as attending to diverse bodily needs (such as cleaning and moisturizing) while maintaining comfort and dignity. Listening, talking with, and understanding (particularly between professionals and the family) was the next most frequent activity, followed by creating an esthetical, safe, and pleasing environment for the dying person and his or her family, and necessary “backstage” activities, such as organizing paperwork or care plans. Other common activities included observing and assessing, which were often described as being carried out simultaneously with other interventions; just being present (described as increasingly important close to death); performing rituals surrounding death and dying (usually directed to families); guiding and facilitating (encompassing support in a compassionate manner); and finally, giving oral and written information and advice (usually to families).
What Do These Findings Mean?
These findings show that providing for fundamental human needs close to death is complex and sophisticated but ultimately integrated into a common theme of caregiving. This study also identifies a number of areas needing further investigation, such as enhancing the sensory and general environment for the patient and family. Finally, this study suggests that developing a greater level of detail, such as improved terminology for end-of-life care, would enhance appreciation of the nuances and complexity present in non-pharmacological care provision during the last days of life, with potential benefit for clinical practice, teaching, and research.
Additional Information
Please access these websites via the online version of this summary at http://dx.doi.org/10.1371/journal.pmed.1001173.
The OPCARE9 website details more information about this end-of-life care initiative
The World Health Organization website defines palliative care, and Wikipedia gives more information (note that Wikipedia is a free online encyclopedia that anyone can edit; available in several languages)
NHS Choices also provides information about end-of-life care
doi:10.1371/journal.pmed.1001173
PMCID: PMC3279347  PMID: 22347815
22.  Nursing ethical values and definitions: A literature review 
Background:
Ethical values offer a framework for behavior assessment, and nursing values influence nurses’ goals, strategies, and actions. A literature review was adopted in order to determine and define ethical values for nurses.
Materials and Methods:
This literature review was conducted based on the Centre for Reviews and Dissemination guidelines. The key words used to search relevant sources were nursing, ethics, ethical values, and nursing values. The search of articles in English was carried out in Medline, CINAHL, PubMed, Scopus, Ovid, and Proquest databases. The search of articles in Persian was conducted in databases of Magiran, SID, and Irandoc publications. After assessing and analyzing the obtained data, 17 articles which had a distinct definition of ethical values were chosen and subjected to a thorough study.
Results:
The search yielded 10 nursing ethical values: Human dignity, privacy, justice, autonomy in decision making, precision and accuracy in caring, commitment, human relationship, sympathy, honesty, and individual and professional competency.
Conclusions:
This study showed that common ethical values are generally shared within the global community. However, in several areas, influences of social, cultural, and economical status and religious beliefs on values result in a different definition of these values. This study revealed that based on humanistic nature of nursing, common values in nursing protect human dignity and respect to the patients. Recognizing and definition of ethical values can help to improve nursing practice and develop codes of ethics.
PMCID: PMC3748548  PMID: 23983720
Ethics; literature review; nursing; professional values; values
23.  Dignity in end-of-life care: results of a national survey of US physicians 
Context
Debates persist about the relevance of “dignity” as an ethical concept in US healthcare, especially in end-of-life care.
Objective
To describe the attitudes and beliefs regarding the usefulness and meaning of the concept of dignity and to examine judgments about a clinical scenario in which dignity might be relevant.
Methods
2000 practicing U.S. physicians, from all specialties, were mailed a survey. Main measures included physician’s judgments about an end-of-life clinical scenario (criterion variable), attitudes about the concept of dignity (predictors), and their religious characteristics (predictors).
Results
1032 eligible physicians (54%) responded. Nine out of ten (90%) physicians reported that dignity was relevant to their practice. After controlling for age, gender, region, and specialty, physicians who judged that the case patient had either some dignity or full dignity, and who agreed that dignity is given by a creator, were all positively associated with believing that the patient’s life was worth living [OR 10.2 (5.8–17.8), OR 20.5 (11.4–36.8), OR 4.7 (3.1–7.0), respectively]. Respondents who strongly agreed that “all living humans have the same amount of dignity” were also more likely to believe that the patient’s life was worth living [OR 1.8 (1.2–2.7)]. Religious characteristics were also associated with believing that the case patient’s life was worth living [OR 4.1 (2.4–7.2), OR 3.2 (1.6–6.3), OR 9.2 (4.3–19.5), respectively].
Conclusion
US physicians view the concept of dignity as useful. Those views are associated with their judgments about common end-of-life scenarios in which dignity concepts may be relevant.
doi:10.1016/j.jpainsymman.2011.09.020
PMCID: PMC3967404  PMID: 22762966
human dignity; end-of-life care; physician religiosity
24.  Challenges to conducting research with older people living in nursing homes 
BMC Geriatrics  2009;9:38.
Background
Although older people are increasingly cared for in nursing homes towards the end of life, there is a dearth of research exploring the views of residents. There are however, a number of challenges and methodological issues involved in doing this. The aim of this paper is to discuss some of these, along with residents' views on taking part in a study of the perceptions of dignity of older people in care homes and make recommendations for future research in these settings.
Methods
Qualitative interviews were used to obtain the views on maintaining dignity of 18 people aged 75 years and over, living in two private nursing homes in South East London. Detailed field notes on experiences of recruiting and interviewing participants were kept.
Results
Challenges included taking informed consent (completing reply slips and having a 'reasonable' understanding of their participation); finding opportunities to conduct interviews; involvement of care home staff and residents' families and trying to maintain privacy during the interviews. Most residents were positive about their participation in the study, however, five had concerns either before or during their interviews. Although 15 residents seemed to feel free to air their views, three seemed reluctant to express their opinions on their care in the home.
Conclusion
Although we experienced many challenges to conducting this study, they were not insurmountable, and once overcome, allowed this often unheard vulnerable group to express their views, with potential long-term benefits for future delivery of care.
doi:10.1186/1471-2318-9-38
PMCID: PMC2745410  PMID: 19703277
25.  Perception of Iranian nurses regarding ethics-based palliative care in cancer patients 
Palliative care is still a topic under discussion in the Iranian healthcare system, and cancer patients require palliative care. Moreover, nursing ethics has an important role in caring for these patients. The purpose of this study was to identify the perception of Iranian nurses regarding ethics-based palliative care in cancer patients.
This study was done with a qualitative approach and by using content analysis. In this study, 14 nurses were selected through purposive sampling, and a face-to-face semi structured interview was conducted with each of them. After data collection, all interviews were transcribed and reviewed, and categories were extracted. At first, similarities in meaning were reviewed and based on centralization arranged in sub-categories. Then, relevant sub-categories were arranged in a category after a second review.
In general, original categories in the ethics-based palliative care in cancer patients encompass the following: “human dignity”, “professional truthfulness” and “altruism”. Human dignity has 3 sub-categories consisting of ‘respecting patients’, ‘paying attention to patient values’ and ‘empathizing’. Professional truthfulness has 2 sub-categories consisting of ‘truthful speech’ and ‘truthful action’. Lastly, altruism has 3 sub-categories consisting of ‘complete and multi-dimensional patient acceptance’, ‘supportive behavior’ and ‘responsibility’.
Content analysis of ethics-based palliative care in cancer patients revealed the required conditions for this type of care based on the perception of nurses. The results of this study suggest that in nurses’ point of view, human dignity, professional truthfulness and altruism all have important roles in ethics-based palliative care in cancer. The findings of this study will give nurses a greater knowledge about ethics-based palliative care in cancer patients, leading to a better understanding of the ethical needs of these patients, and may ultimately help improve the nursing practice.
PMCID: PMC3885223  PMID: 24427489
cancer; nursing ethics; nursing care; human dignity; palliative care

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