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.
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".
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.
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.
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.
Current Controlled Clinical Trials: ISRCTN37589515
This paper has its origins in Jonathan Mann's insight that the experience of dignity may explain the reciprocal relationships between health and human rights. It follows his call for a taxonomy of dignity: "a coherent vocabulary and framework to characterize dignity."
Grounded theory procedures were use to analyze literature pertaining to dignity and to conduct and analyze 64 semi-structured interviews with persons marginalized by their health or social status, individuals who provide health or social services to these populations, and people working in the field of health and human rights.
The taxonomy presented identifies two main forms of dignity–human dignity and social dignity–and describes several elements of these forms, including the social processes that violate or promote them, the conditions under which such violations and promotions occur, the objects of violation and promotion, and the consequences of dignity violation. Together, these forms and elements point to a theory of dignity as a quality of individuals and collectives that is constituted through interaction and interpretation and structured by conditions pertaining to actors, relationships, settings, and the broader social order.
The taxonomy has several implications for work in health and human rights. It suggests a map to possible points of intervention and provides a language in which to talk about dignity.
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.
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.
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.
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.
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.
In practicing existential and human advocacy, or engaging in a relational narrative, nurses may assist persons who experience health inequalities to clarify their values, and, in becoming more fully their authentic selves, community members who ordinarily feel powerless in the public space may act with confidence in influencing the distribution of health-care resources. In this paper, the writers describe research characterizing nurses’ advocacy practices and review the concepts of respect and self-interpretation as a foundation for arguing that nurses who engage in relational narratives with the persons they serve may encourage continuing acts of self-understanding. Investigators indicated that nurses characterized their practices as a therapeutic endeavor, and that their practices were grounded in respect. Practicing nurses may need self-awareness to habitually convey respect for human dignity, in addition, nurse educators ought to attend to the professional development of student nurses, providing opportunities for the formation of character traits or qualities.
Health inequalities; existential advocacy; relational narrative; respect; discernment of values; character formation.
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.
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.
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.
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.
This article discusses the relation between empirical and normative approaches in bioethics. The issue of dwarf tossing, while admittedly unusual, is chosen as point of departure because it challenges the reader to look upon several central bioethical themes – including human dignity, autonomy, and the protection of vulnerable people – with fresh eyes. After an overview of current approaches to the integration of empirical and normative ethics, we consider five ways that the empirical and normative can be brought together to speak to the problem of dwarf tossing: prescriptive applied ethics, theorist ethics, critical applied ethics, particularist ethics and integrated empirical ethics. We defend a position of critical applied ethics that allows for a two-way relation between empirical and normative theories. The approach we endorse acknowledges that a social practice can and should be judged by both the gathering of empirical data and by the normative ethics. Critical applied ethics uses a five stage process that includes: (a) determination of the problem, (b) description of the problem, (c) empirical study of effects and alternatives, (d) normative weighing and (e) evaluation of the effects of a decision. In each stage, we explore the perspective from both the empirical (sociological) and the normative ethical poles that, in our view, should operate as two independent focuses of the ellipse that is called bioethics. We conclude by applying our five stage critical applied ethics to the example of dwarf tossing.
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.
Aged; gerontology; mental disorders; municipal care of the old; phenomenological hermeneutics; psychiatry
Loss of dignity for people with advanced cancer is associated with high levels of psychological and spiritual distress and the loss of the will to live. Dignity Therapy is a brief psychotherapy, which 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 in Canada, Australia and the USA, has suggested that Dignity Therapy is beneficial to people with advanced 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 people with advanced cancer who have been referred to hospital-based palliative care teams in the UK, and to pilot the methods for a Phase III RCT.
A randomised controlled open-label trial. Forty patients with advanced cancer 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 four weeks after the intervention (equivalent in the control group). The primary outcome is patients' sense of dignity (potential effectiveness) assessed by the Patient Dignity Inventory. Secondary outcomes for patients include distress, hopefulness and quality of life. In view of the relatively small sample size, quantitative analyses are mainly descriptive. The qualitative analysis uses the Framework method.
Dignity Therapy is brief, can be delivered at the bedside and may help both patients and their families. This detailed exploratory research shows if it is feasible to offer Dignity Therapy to patients with advanced cancer, many of whom are likely to be in the terminal stage of their illness, whether it is acceptable to them and their families, if it is likely to be effective, and determine whether a Phase III RCT is desirable.
Current Controlled Clinical Trials: ISRCTN29868352
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.
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.
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.
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.
social care; quality of life; ASCOT; validity; long-term care
This article focuses on Danish patients’ experience of autonomy and its interplay with dignity and integrity in their meeting with health professionals. The aim is to chart the meanings and implications of autonomy for persons whose illness places them in a vulnerable life situation. The interplay between autonomy and personal dignity in the meeting with health care staff are central concepts in the framework. Data collection and findings are based on eight qualitative semi-structured interviews with patients. Patients with acute, chronic, and life threatening diseases were represented including surgical as well as medical patients. The values associated with autonomy are in many ways vitalising, but may become so dominant, autonomy seeking, and pervasive that the patient's dignity is affected. Three types of patient behaviour were identified. (1) The proactive patient: Patients feel that they assume responsibility for their own situation, but it may be a responsibility that they find hard to bear. (2) The rejected patient: proactive patients take responsibility on many occasions but very active patients are at risk of being rejected with consequences for their dignity. (3) The knowledgeable patient: when patients are health care professionals, the patient's right of self-determination was managed in a variety of ways, sometimes the patient's right of autonomy was treated in a dignified way but the opposite was also evident. In one way, patients are active and willing to take responsibility for themselves, and at the same time they are “forced” to do so by health care staff. Patients would like health professionals to be more attentive and proactive.
Autonomy; self-management; independence; dignity; integrity
Maintaining dignity, the quality of being worthy of esteem or respect, is considered as a goal of palliative care. The aim of this study was to analyse the construct of personal dignity and to assess the content validity of the Patient Dignity Inventory (PDI) in people with an advance directive in the Netherlands.
Data were collected within the framework of an advance directives cohort study. This cohort study is aiming to get a better insight into how decisions are made at the end of life with regard to advance directives in the Netherlands. One half of the cohort (n = 2404) received an open-ended question concerning factors relevant to dignity. Content labels were assigned to issues mentioned in the responses to the open-ended question. The other half of the cohort (n = 2537) received a written questionnaire including the PDI. The relevance and comprehensiveness of the PDI items were assessed with the COSMIN checklist ('COnsensus-based Standards for the selection of health status Measurement INstruments').
The majority of the PDI items were found to be relevant for the construct to be measured, the study population, and the purpose of the study but the items were not completely comprehensive. The responses to the open-ended question indicated that communication and care-related aspects were also important for dignity.
This study demonstrated that the PDI items were relevant for people with an advance directive in the Netherlands. The comprehensiveness of the items can be improved by including items concerning communication and care.
Patients often experience erosion of dignity as they cope with the dying process. Preserving patient dignity is a sentinel premise of palliative care. This study was conducted to gain a better understanding of factors influencing erosion of dignity at the end of life. We conducted an open-ended written survey of 100 multidisciplinary providers (69% response rate) and responses were categorized to identify 18 themes that were used to create a card-sort tool. The initial 18-item tool was administered to nurses (n = 83), nonhospice community-dwelling subjects (n = 190) and hospice patients (n = 26) and a principal component analysis (PCA) was used to identify the 6 primary factors. The key item in each factor as identified by the PCA was used to create the final 6-item dignity card-sort tool (DCT). The DCT was also administered to physicians caring for palliative care patients (n = 21). For each of the final 6 items, the correlation between the respondents (nurses, physicians, nonterminally ill subjects, and subjects receiving hospice care) was calculated using the Spearman's correlation coefficient. The nurses were very highly positively correlated with the physicians (correlation coefficient = 0.94) and the community-dwelling nonterminally ill subjects were highly positively correlated with the subjects receiving hospice care (correlation coefficient = 0.67). More importantly, both the nurses and physicians were negatively correlated with both community dwelling nonterminally ill subjects and the subjects receiving hospice care. The health professionals in the study felt that treating a patient with disrespect and not carrying out their wishes resulted in erosion of dignity. In contrast patients thought that poor medical care and untreated pain were the most important factors leading to erosion of dignity at life's end. The DCT is a promising tool that may help clinicians identify key factors resulting in perceptions of erosion of dignity in adult palliative care patients.
This study aimed to assess the appropriateness of the International Classification for Nursing Practice (ICNP) Palliative Care for Dignified Dying catalogue for palliative nursing in the Philippines.
The study recruited 230 nurses to complete the ICNP Dignified Dying survey. Participants rated ICNP nursing intervention items and identified additional interventions for promoting dignified dying.
All of the intervention items were scored on average as being at least ‘slightly important’. The three top-ranked nursing intervention categories were providing social support, maintaining privacy boundaries, and relieving psychological distress.
The ICNP Palliative Care for Dignified Dying catalogue lists nursing interventions that are appropriate to promoting dignity at the end of life in the Philippines.
Dignified dying; Philippines; Interventions; International Council of Nurses
In October 2005, the United Nations Educational, Scientific and Cultural Organization adopted the Universal Declaration on Bioethics and Human Rights (UDBHR). A concept of central importance in the declaration is that of “human dignity”. However, there is lack of clarity about its scope, especially concerning the question of whether prenatal human life has the same dignity and rights as born human beings. This ambiguity has implications for the interpretation of important articles of the delcaration, including 2(c), 4, 8, 10 and 11. The paper applies relevant provisions of the UDBHR to specific cases, addresses problems of internal consistency and considers attempts at clarifying the scope of “human dignity” by the negotiating parties. An analysis of the important relationship between the UDBHR and the Universal Declaration of Human Rights, to which the UDBHR refers in its title and elsewhere, shows that because of a crucial emphatic asymmetry, a broad reading according to which the UDBHR must be understood to ascribe human rights and dignity to prenatal life is untenable. However, the view that the UDBHR confers human rights and dignity on humans from the moment of birth onwards is robust and defensible. This conclusion is important for a proper understanding of the declaration and its use, as stated in Articles 1(2) and 22, the latter urging states “… to give effect to the principles … in this declaration”. Similarly, it has implications for the use of the declaration in the wider context of bioethics‐related law and policy, as well as in academic and other discussions where increasing reference to the UDBHR is likely.
human dignity; universal declaration on bioethics and human rights; universal declaration on human rights; human life; cloning
Preserving patient dignity is a sentinel premise of palliative care. This study was conducted to gain a better understanding of factors influencing preservation of dignity in the last chapter of life.
We conducted an open-ended written survey of 100 multidisciplinary providers (69% response rate) and responses were categorized to identify 2 main themes, 5 subthemes, and 10 individual factors that were used to create the preservation of dignity card-sort tool (p-DCT). The 10-item rank order tool was administered to a cohort of community dwelling Filipino Americans (n = 140, age mean = 61.3, 45% male and 55% female). A Spearman correlation matrix was constructed for all the 10 individual factors as well as the themes and subthemes based on the data generated by the subjects.
The individual factors were minimally correlated with each other indicating that each factor was an independent stand-alone factor. The median, 25th and 75th percentile ranks were calculated and “s/he has self-respect” (intrinsic theme, self-esteem subtheme) emerged as the most important factor (mean rank 3.0 and median rank 2.0) followed by “others treat her/him with respect” (extrinsic theme, respect subtheme) with a mean rank = 3.6 and median = 3.0.
The p-DCT is a simple, rank order card-sort tool that may help clinicians identify patients' perceptions of key factors influencing the preservation of their dignity in the last chapter of life.
This study aims to understand the meaning of human dignity among adults in Korea. The authors utilized a qualitative study design. Data were collected with non-structured questions in a sample of 74 Korean adults and were then analyzed with qualitative content analysis. There were 4 categories, 31 themes and 106 theme clusters classified. The four categories that emerged were: fullness of dignity, loss of dignity, reinforcement of dignity, and enfeeblement of dignity. The results of this study may contribute to healthcare professionals’ understanding of Korean adults’ human dignity.
Content analysis; Human dignity; Korean adults; Qualitative research
The rehabilitation needs and goals of older people differ in many respects from those of the young. In younger individuals a crippling condition may affect an otherwise healthy body, while in an older person it may be superimposed on other pre-existing degenerative diseases. Thus, in older patients the restorative or rehabilitative phase rarely can be separated from the phase of definitive medical treatment.
The primary goal of rehabilitation of younger individuals is usually vocational. In the older group this goal or objective is, by and large, secondary. This does not minimize, however, the value of medical and social services in the rehabilitation of older persons. The simple ability to care for his own personal needs can do much to help the elderly disabled patient regain his dignity and self-respect and remove his fears of becoming a burden on his family or society.
Targeting social isolation in older people is a growing public health concern. The proportion of older people in society has increased in recent decades, and it is estimated that approximately 25% of the population will be aged 60 or above within the next 20 to 40 years. Social isolation is prevalent amongst older people and evidence indicates the detrimental effect that it can have on health and wellbeing. The aim of this review was to assess the effectiveness of interventions designed to alleviate social isolation and loneliness in older people.
Relevant electronic databases (MEDLINE, EMBASE, ASSIA, IBSS, PsycINFO, PubMed, DARE, Social Care Online, the Cochrane Library and CINAHL) were systematically searched using an extensive search strategy, for randomised controlled trials and quasi-experimental studies published in English before May 2009. Additional articles were identified through citation tracking. Studies were included if they related to older people, if the intervention aimed to alleviate social isolation and loneliness, if intervention participants were compared against inactive controls and, if treatment effects were reported. Two independent reviewers extracted data using a standardised form. Narrative synthesis and vote-counting methods were used to summarise and interpret study data.
Thirty two studies were included in the review. There was evidence of substantial heterogeneity in the interventions delivered and the overall quality of included studies indicated a medium to high risk of bias. Across the three domains of social, mental and physical health, 79% of group-based interventions and 55% of one-to-one interventions reported at least one improved participant outcome. Over 80% of participatory interventions produced beneficial effects across the same domains, compared with 44% of those categorised as non-participatory. Of interventions categorised as having a theoretical basis, 87% reported beneficial effects across the three domains compared with 59% of interventions with no evident theoretical foundation. Regarding intervention type, 86% of those providing activities and 80% of those providing support resulted in improved participant outcomes, compared with 60% of home visiting and 25% of internet training interventions. Fifty eight percent of interventions that explicitly targeted socially isolated or lonely older people reported positive outcomes, compared with 80% of studies with no explicit targeting.
More, well-conducted studies of the effectiveness of social interventions for alleviating social isolation are needed to improve the evidence base. However, it appeared that common characteristics of effective interventions were those developed within the context of a theoretical basis, and those offering social activity and/or support within a group format. Interventions in which older people are active participants also appeared more likely to be effective. Future interventions incorporating all of these characteristics may therefore be more successful in targeting social isolation in older people.
Development of interventions that address psychosocial and existential distress in people with motor neurone disease (MND) or that alleviate caregiver burden in MND family carers have often been suggested in the research literature. Dignity therapy, which was developed to reduce psychosocial and existential distress at the end of life, has been shown to benefit people dying of cancer and their families. These results may not be transferable to people with MND. The objectives of this study are to assess the feasibility, acceptability and potential effectiveness of dignity therapy to enhance the end of life experience for people with motor neurone disease and their family carers.
This is a cross-sectional study utilizing a single treatment group and a pre/post test design. The study population will comprise fifty people diagnosed with MND and their nominated family carers. Primarily quantitative outcomes will be gathered through measures assessed at baseline and at approximately one week after the intervention. Outcomes for participants include hopefulness, spirituality and dignity. Outcomes for family carers include perceived caregiver burden, hopefulness and anxiety/depression. Feedback and satisfaction with the intervention will be gathered through a questionnaire.
This detailed research will explore if dignity therapy has the potential to enhance the end of life experience for people with MND and their family carers, and fill a gap for professionals who are called on to address the spiritual, existential and psychosocial needs of their MND patients and families.
ACTRN Trial Number: ACTRN12611000410954
Motor neurone disease; Amyotrophic lateral sclerosis; Palliative care; Existential distress; Family carers; Dignity therapy
At present, there are few alternatives to institutional care for our aging citizens, because nearly all efforts to help the elderly have been directed toward the institutional setting. Supporting services for those older persons who could continue living at home are either inadequate or nonexistent in most communities. Because of these gaps in services, many older people are forced to seek institutional care, which proves to be damaging to the recipient and costly to the community. The elderly require a broad range of services which would permit them to continue living independently in the community with dignity and security.
This article examines how nursing home care workers use emotions to construct dignity at work. Previous scholarship has shown how the financial and organizational characteristics of nursing homes shape and constrain emotion work among staff. Using evidence gathered during 18 months of participant observation in two nursing homes and 65 interviews with staff, this article analyzes how, despite obstacles, nursing home care workers generated authentic emotional attachments to residents. Surprisingly, some staff members said they particularly appreciated working with residents difficult to control. They felt accomplished when such residents successfully transitioned from life at home to life in institutional care. Emotions created dignity for staff and induced compliance among residents. Emotions are not only generated by organizations and imposed on workers; staff themselves produced emotions—sometimes in ways consistent with organizational demands, and sometimes not—and they consistently found in their emotions a resource to manage the strains of their work lives.
aging; care work; dignity; emotions; ethnography; health; nursing homes
This paper examines the value of facilitated telephone and online support groups for palliative care. Telephone interviews were conducted with twenty people living with advanced cancer who had participated in either a telephone or online support group facilitated by the Cancer Council Victoria, Melbourne, Australia. Two dominant participant narratives emerged: a focus on dying with dignity or an interest in deferring discussion of death and dying to focus on the present. Despite the different approaches, participants found the technology-based support groups to be accessible and safe environments in which to discuss difficult topics in privacy. Technology-based strategies provide opportunities for health professionals to provide social and emotional care to more people by moving beyond individualised care and facilitate peer-to-peer support at the end of life, especially to those with specific needs. Such options are feasible for palliative care services to set up and acceptable to a group of clients, especially for younger clients or those socially or geographically isolated.