Cette réédition totalement revue et enrichie contribue à une appropriation des évolutions législatives portées par la loi du 2 février 2016 créant de nouveaux droits en faveur des malades et des personnes en fin de vie (droits de la personne, sédation profonde et continue, souffrance, directives anticipées opposables, etc.). Les conditions du mourir interrogent à la fois nos obligations sociales et les exigences du soin. Alors que s'instaurent une nouvelle culture de la fin de vie, de nouvelles solidarités, quelles seront les incidences sur les pratiques professionnelles au service de la personne malade et de ses proches ? Ces situations toujours singulières, irréductibles aux débats généraux portant sur "la mort dans la dignité" justifient une exigence de clarification, la restitution d’expériences et la transmission de savoirs vrais.
Dans une approche pluridisciplinaire, cet ouvrage associe les meilleures compétences pour proposer une synthèse rigoureuse et complète des réflexions et des expériences au cœur des débats les plus délicats de notre société. Il constitue une indispensable référence à destination des professionnels mais tout autant d'un large public, la concertation nationale sur la fin de vie ayant fait apparaître un important besoin d'informations dans ces domaines à la fois intimes et publics.
Cette "interruption volontaire de vieillesse", c'est avant tout un témoignage touchant pour comprendre le choix et le combat de Jacqueline Jencquel afin d'avoir le droit de terminer sa vie dignement et d'en choisir les conditions. Mourir avant d'être déjà à moitié mort, c'est la vision que défend une femme qui a passionnément aimé la vie et la liberté.
Cet ouvrage offre une analogie de la vie comme une oeuvre littéraire ou d’art, achevée quand on la juge accomplie. Se fondant sur le témoignage de personnes ayant le moyen de mourir volontairement, le philosophe questionne leur conception de la dignité, d’une vie digne d’être vécue et propose une réflexion sur la mort et l’exercice de la liberté.
BACKGROUND: Dignity is an inherent value in palliative care, but understanding dignity among people living with and hospitalized for incurable esophageal cancer has not been explored.
OBJECTIVE: The aim of this study was to empirically explore the meaning of dignity in people hospitalized with incurable esophageal cancer.
METHODS: A qualitative hermeneutic approach, inspired by Gadamer, guided the research process and interpretation of the transcribed interviews. Eighteen patients participated in the study.
RESULTS: The meaning of dignity was revealed as reverential response in care relationships and eating as an undignifying activity. A balance of the healthcare system's framework with the lifeworld of the patient was significant in preserving dignity and gave patients a sense of reverent response. Patients were unable to eat ordinary daily meals, which affected their perception of own body and identity, including interactions with others. The resulting bodily changes and social consequences were of crucial importance to the perceived dignity.
CONCLUSIONS: A dialogical and understanding approach is significant in making the patient feel worthy, consequently helping to uphold a sense of dignity. The changing and decaying body due to eating difficulties bears witness to illness, altering the individual's sense of self, in turn threatening the dignity of identity.
IMPLICATION FOR PRACTICE: The care should be based on a reverential response based on the patients' lifeworld. In doing so, storytelling might be a way. Palliative care for these people needs to stress that patients share other aspects of life that is not totally dominated by their illness, inability to eat, and unrecognizable body.
Fifteen years ago, Ruth Macklin shook the medical community with her claim in the BMJ that dignity is a useless concept. Her essay provoked a storm of reactions. What have we learned from the debate? In this article I analyse the responses to her essay and the following debate to investigate whether she was right that “[d]ignity is a useless concept in medical ethics and can be eliminated without any loss of content.” While some of the commentaries misconstrued her claim and argue against strawmen, others forcefully maintained that the concept of dignity has functions beyond “respect for persons and their autonomy.” One important point that came out of the debate is that dignity is a generic concept that covers more ground than “respect for persons or their autonomy.” In particular, dignity seems to have a wide range of protective functions as well as having reciprocal, relational, and social aspects. Dignity appears more attributional and norm-formative than respect for persons and autonomy. While the claim that dignity is unclear, vague, and can be used sloganistically seems highly relevant, it is argued that this vagueness fulfils important functions in ethics. Moreover, dismissing dignity because of its lack of clarity has implications for “respect for persons” and “autonomy,” which are also used vaguely and sloganistically. No doubt medical ethics should use as a clear concept as the context requires. Nonetheless, dignity still seems to be a widely used generic concept in ethical debates and doing as much ethical work as “respect for persons” or “respect for autonomy.” Therefore, the death of dignity seems to be greatly exaggerated.
In 2017 and 2018, the English courts were asked to decide whether continued life-sustaining treatment was in the best interests of three infants: Charlie Gard, Alfie Evans and Isaiah Haastrup. Each infant had sustained catastrophic, irrecoverable brain damage. Dignity played an important role in the best interests assessments reached by the Family division of the High Court in each case. Multiple conceptions of dignity circulate, with potentially conflicting implications for infants such as Charlie, Alfie and Isaiah. The judgements do not explicate the conceptions of dignity upon which they rely. This article reconstructs the conceptions of dignity invoked in these judgements, finding that a broadly Kantian, agential conception dominates, under which human dignity requires the prospect of agency. This conception is situated within the broader body of thought on dignity, and the potentially adverse implications of applying the reconstructed conception in best interests assessments for infants with severely restricted consciousness are discussed.
Dignity is a core topic within palliative care, and thus, it is important to get a detailed assessment of healthcare providers’ (HCPs) perspectives on this subject. This study aimed to explore various HCPs’ perspectives on end-of-life patients’ dignity by collecting different testimonies about what dignity entails and which strategies HCPs use to maintain patients’ dignity. A sample of 104 participants was interviewed using two open questions to collect qualitative data. Content analysis was performed to identify the central themes among answers. Regarding the first question (“What comes to your mind when I say “Dignity” in relation to your patients?”), nine themes emerged. The majority sampled stated that dignity means respecting the patient by considering him/her as a person in his/her entirety. Two other themes frequently emerged: “Respect the patient’s will/wishes/needs” and “Self-determination/Self-expression.” Concerning the second question (“Which strategies do you use to maintain patients’ dignity?”), seven themes emerged. The “Caring skills” theme was most frequently identified, followed by “Empathic skills” and “Professional strategies.” This study has enabled a better understanding of HCPs’ perspectives on end-of-life patients’ dignity. Through the interviews, HCPs were given an opportunity to reflect on dignity, possibly helping them improve their understanding of their patients’ conditions and promote higher quality of care.
BACKGROUND: Safeguarding the dignity of patients at the end of life is a key objective in palliative care practice in Denmark. The concept of dignity and how it influences a dying persons' quality of life is thus influential in end-of-life care at hospices. However, what is meant by dignity, how dignity is understood and practiced by healthcare professionals in Danish hospices, and whether this relates to the patients' understandings and needs concerning dignity remains unanswered.
AIM: The aim of this study was to explore and improve dignity in care through an action research study with patients and hospice staff at two different hospices in Denmark. This was done by exploring how patients and healthcare professionals expressed their understandings and needs concerning dignity and involving participants in the research process with the goal of improving dignity in care.
METHODS: An action research method with reflection-of-praxis and action-in-praxis was applied. It was combined with methods of semi-structured individual interviews with twelve patients, five staff and nine focus-group interviews with staff.
RESULTS: Three themes emerged from the analysis of data. The themes were as follows: (1) being understood, (2) contributing and (3) holistic care. Deeper analysis indicated that staff understandings of dignity mostly focused on preserving patients' autonomy, whereas patients expressed needs for relational and spiritual aspects of dignity. Staff were mostly concerned about preserving patients' autonomy when providing dignity in care, however, through the action-in-praxis they increased their awareness on their own praxis and patients' needs and understanding concerning dignity. The theoretical model on dignity presented in the study also worked as a map to guide staffs' reflections on dignity in praxis and facilitated a broader focus on supporting and caring for patients' dignity in care. We believe this study has improved dignity in care at the two hospices involved in the study.
Purpose: The aim of the study was to determine the effectiveness of dignity therapy for end-of-life patients with cancer.
Methods: This study used a quasi-experimental study design with a nonrandomized controlled trial. Dignity therapy was used as an intervention in the experimental group, and general visit was used in the control group. Thirty end-of-life patients with cancer were recruited, with 16 in the experimental group and 14 in the control group. Outcome variables were the participants' dignity, demoralization, and depression. Measurements were taken at the following time points: pre-test (before intervention), post-test 1 (the 7th day), and post-test 2 (the 14th day). The effectiveness of the interventions the two groups was measured using the generalized estimating equation, with the p value set to be less than 0.05.
Results: After dignity therapy, the end-of-life patients with cancer reflected increased dignity significantly [ß = -37.08, standard error (SE) = 7.43, Wald 2 = 24.94, p < 0.001], whereas demoralization (ß = -39.55, SE = 6.42, Wald 2 = 37.95, p < 0.001) and depression (ß = -12.01, SE = 2.17, Wald 2 = 30.71, p < 0.001) were both reduced significantly.
Conclusion: Clinical nurses could be adopting dignity therapy to relieve psychological distress and improve spiritual need in end-of-life patients with cancer. Future studies might be expanded to looking at patients vis-à-vis end-of-life patients without cancer to improve their psychological distress. These results provide reference data for the care of end-of-life patients with cancer for nursing professionals.
Background: Some evidence suggests the wish to hasten death is related to poor health-related quality of life. Deficits in perceived dignity and self-efficacy are risk factors for wish to hasten death that also impact health-related quality of life.
Aim: To compare perceived health-related quality of life, dignity and self-efficacy in patients with advanced cancer who either do (case group) or do not (control group) express a wish to hasten death. Cases and controls were matched on sociodemographic and functional characteristics.
Design: A comparative cross-sectional study.
Participants: A total of 153 adult patients with advanced cancer were assessed for wish to hasten death using the Desire for Death Rating Scale. Scores >= 1 indicate some degree of wish to hasten death (case group, n = 51), and score = 0 implies no wish to hasten death (control group, n = 102). Assessments included health-related quality of life using the European Organization for Research and Treatment of Cancer Quality-of-Life Core 15-Item Palliative Questionnaire, perceived loss of dignity using the Patient Dignity Inventory and self-efficacy using the General Self-Efficacy Scale.
Results: Patients with a wish to hasten death had worse emotional functioning (p < 0.001), greater perceived loss of dignity (p < 0.001) and lower self-efficacy (p = 0.001). There was no difference in most physical symptoms. Perceived overall health-related quality of life was significantly worse for those with a clinically relevant wish to hasten death (p = 0.023) and marginally worse for the case group than the control group (p = 0.052).
Conclusion: Patients with wish to hasten death showed lower perceived dignity, self-efficacy and emotional quality of life than patients without wish to hasten death without necessarily perceiving worse physical symptoms.
OBJECTIVES: With people living longer, palliative care may be required for lengthier periods of time. This puts demands on healthcare organizations to provide optimal palliative care. Maintaining dignity is central for any person's health and quality of life, but especially for a person with palliative care needs. Dignity-conserving care needs to be evaluated to increase knowledge about outcomes and how to assess these. The purpose of this integrative review was to identify outcomes studied within dignity-conserving care and how these have been operationalized.
METHODS: An integrative review was conducted in 26 quantitative or mixed-method studies and study protocols. Thematic synthesis with an abductive approach was used for analysis.
RESULTS: Seven themes of studied outcomes were identified, as well as four cluster themes: themes related to Illness-Related Concerns, themes related to the Dignity-Conserving Repertoire, themes related to the Social Dignity Inventory, and themes regarding Overarching Dignity Issues. Most outcomes studied dealt with Illness-Related Concerns within the themes of "Performance, symptoms and emotional concerns" and "End-of-life and existential aspects". Themes linked to the Social Dignity Inventory had the lowest number of outcomes studied. Outcomes regarding overarching dignity issues such as "Dignity-related distress" and "Quality of life" were common. However, the results lacked concrete communication outcomes.
SIGNIFICANCE OF RESULTS: The results will underpin future research in which dignity-conserving care is implemented and evaluated, and contribute to the provision of evidence-based palliative care. A greater focus on outcomes within cluster themes related to the Dignity-Conserving Repertoire and the Social Dignity Inventory is needed, as is more focus on communication outcomes.
INTRODUCTION: The Patient Dignity Question (PDQ) is a clinical tool developed with the aim of reinforcing the sense of personhood and dignity, enabling health care providers (HCPs) to see patients as people and not solely based on their illness.
OBJECTIVE: To study the acceptability and feasibility of the Portuguese version of the PDQ (PDQ-PT) in a sample of palliative care patients cared for in primary care (PC).
METHOD: A cross-sectional study using 20 palliative patients cared for in a PC unit. A post-PDQ satisfaction questionnaire was developed.
RESULTS: Twenty participants were included, 75% were male; average age was 70 years old. Patients found the summary accurate, precise, and complete; all said that they would recommend the PDQ to others and want a copy of the summary placed on their family physician's medical chart. They felt the summary heightened their sense of dignity, considered it important that HCPs have access to the summary and indicated that this information could affect the way HCPs see and care for them. The PDQ-PT's took 7 min on average to answer, and 10 min to complete the summary.
SIGNIFICANCE OF RESULTS: The PDQ-PT is well accepted and feasible to use with palliative patients in the context of PC and seems to be a promising tool to be implemented. Future trials are now warranted.
Background: The Patient Dignity Question (PDQ) is a single question, which directly asks the patient, “What should I know about you as a person to help me take the best care of you that I can?” Research has demonstrated that the PDQ enhances quality health care within an inpatient palliative care setting; however, no research to date has examined the PDQ in an outpatient setting, particularly a psycho-oncology setting.
Objective: The PDQ was administered as part of routine clinical care in an outpatient psycho-oncology clinic to enhance patient-centered care.
Methods: Individuals diagnosed with cancer (n = 66) were referred for individual psychotherapy primarily for anxiety and/or depression. After gathering a thorough patient history during the initial psychology consult, patients were asked the PDQ as it was worded without further prompting. Patient responses were then qualitatively analyzed to measure the most common themes.
Results: The themes expressed by patients in response to the PDQ included Who I Am (59.7%), which referenced individual characteristics and core personality traits, What My Cancer Journey Has Been (21.7%) described how patients' lives have been impacted since receiving a cancer diagnosis, and What I Want to Achieve (18.4%) in which patients described what goals they wanted to achieve in their lives (both general and specific to psychotherapy).
Conclusions: Data from this small pilot study show promise that this brief assessment tool can be readily added to a psychological intake assessment and patients appreciated being asked about their personhood. Incorporating the PDQ into standard psychological care allows patients to be “seen” and helps us to acknowledge the person in the patient.
Cette publication propose d'abord une nouvelle conception permettant de réduire l'important "saut cognitif" que nécessite la pensée d'unifier les soins palliatifs et les soins intensifs. Un portrait des différents enjeux entourant la fin de vie à l'USI sera ensuite présenté, suivi d'une brève recension des interventions susceptibles de faciliter l'intégration de cette conception à l'USI.
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Cet ouvrage de la collection "Espace éthique" regroupe des contributions sur la notion de vulnérabilité, notamment sur les problèmes et les opportunités posés par son usage dans la société. Ainsi, une politique de protection des personnes vulnérables peut, dans le même temps, être une source d'exclusion. Les auteurs estiment que cette nouvelle éthique peut être positive à condition de ne pas verser dans l'apologie de la vulnérabilité.
Background: Dignity is a vitally important aspect of the lives of advanced cancer patients. We conducted a systematic review and meta-analysis of the effectiveness of dignity therapy in this patient population.
Methods: We searched for randomized controlled trials comparing dignity therapy versus standard care for patients with advanced cancer in five comprehensive databases (March 2019), two clinical trial registries and one gray literature database (August 2019). The quality of the studies was assessed using the risk of bias tool recommended by the Cochrane Handbook Version 5.1.0. We used GRADE approach to assess the certainty of evidence. Meta-analysis was performed with RevMan version 5.3. Outcomes of interest included anxiety, depression, dignity-related distress and quality of life (QoL).
Results: Ten trials evaluating 904 patients (control, 449; experimental, 455) were identified. Six trials included patients with different types of advanced cancer, and four trials included patients with a single advanced cancer (lung cancer [20%], breast cancer [10%], and hepatocellular carcinoma [10%]). Compared with the standard care, dignity therapy decreased the score of anxiety, depression, and dignity-related distress of the advanced cancer patients (SMD = -1.07, 95% CI: [-1.57, -0.58], p < .05; SMD = -1.31, 95% CI: [-1.92, -0.70], p < .05; MD = -7.30, 95% CI: [- 12.04, - 2.56], p < .05). In addition, no significant differences were found in the patient's QoL (p > .05).
Conclusion: Very low certainty evidence demonstrated that dignity therapy might be a promising treatment, especially in reducing anxiety and depression in advanced cancer patients.
Background: The Patient Dignity Inventory (PDI) is based on an empirically-driven dignity model that has been developed and used for clinically assessing the various sources of dignity-related distress. In a recent review, it received the highest score as a useful instrument in both practice and research in palliative care. The PDI has been adapted to and validated for use in various countries, but not yet Sweden.
Aims: To translate the PDI into Swedish, including cultural adaptation for clinical use.
Methods: A multi-step process of translation, negotiated consensus, expert group discussion (n=7: four invited experts and three researchers) and cognitive interviewing (n=7: persons with palliative care needs).
Findings: Discussion, by the expert reviewers, of both linguistic and cultural issues regarding the content and readability of the translated Swedish version resulted in revisions of items and response alternatives, focusing mainly on semantic, conceptual, and experiential equivalence. A pilot version for cognitive interviews was produced. The analysis of data showed that most of the items were judged to be relevant by the persons with palliative care needs.
Conclusion: The process of translation and adaptation added clarity and consistency. The Swedish version of the PDI can be used in assessing dignity-related distress. The next step will be to test this Swedish version for psychometric properties in a larger group of patients with palliative care needs before use in research.
The prevalence of urinary incontinence increases as a person ages, as age-related changes make it more difficult to maintain continence. Long-term conditions and treatments prescribed to treat conditions, such as heart failure, can lead to an urgency to void the bladder. Frailty can make it difficult for an older person to respond this need. At end of life, mobility is often compromised and people can experience extreme fatigue. Caregivers can obtain support to manage an individual's incontinence during the day but often struggle alone at night. Caregivers can become exhausted and a situation can reach breaking point. Working with the older person and caregivers to determine the goals of care and how to meet them can make a huge difference. It can take the pressure off the entire family, meet a person's needs and enable the person to stay at home. This article aims to enable nurses to understand the problems older people may experience and how to work with the older person and caregivers to develop solutions that maintain dignity and enhance quality of life.
PURPOSE: To develop and pilot the DD-14 scale, a 14-indicator scale based on the Nursing Outcome Classification "Dignified life closure" (1307).
METHODS: Sixteen experts selected 14 indicators for Spanish populations. Six care home nurses piloted the scale in 50 terminal patients without cognitive impairment. Factorial and reliability analyses were performed and correlations were determined with dependency, symptomatology, and palliative care quality.
FINDINGS: DD-14 demonstrated high reliability (α = 0.916) and a stable factorial structure. It was not influenced by sex, age, or disease and correlated positively with the Barthel index (r = .622; p = .00) and negatively with the Palliative Outcome Scale (r = -.542;p = .00).
CONCLUSIONS: DD-14 is a useful scale for evaluating end-of-life dignity.
IMPLICATIONS FOR NURSING PRACTICE: This instrument could be useful in planning nursing interventions.
Dr. Elisabeth Kübler-Ross is credited as one of the first clinicians to formalize recommendations for working with patients with advanced medical illnesses. In her seminal book, On Death and Dying, she identified a glaring gap in our understanding of how people cope with death, both on the part of the terminally ill patients that face death and as the clinicians who care for these patients. Now, 50 years later, a substantial and ever-growing body of research has identified "best practices" for end of life care and provides confirmation and support for many of the therapeutic practices originally recommended by Dr. Kübler-Ross. This paper reviews the empirical study of psychological well-being and distress at the end of life. Specifically, we review what has been learned from studies of patient desire for hastened death and the early debates around physician assisted suicide, as well as demonstrating how these studies, informed by existential principles, have led to the development of manualized psychotherapies for patients with advanced disease. The ultimate goal of these interventions has been to attenuate suffering and help terminally ill patients and their families maintain a sense of dignity, meaning, and peace as they approach the end of life. Two well-established, empirically supported psychotherapies for patients at the end of life, Dignity Therapy and Meaning Centered Psychotherapy are reviewed in detail.