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.
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.
OBJECTIVE: To investigate the feasibility of using the Patient Dignity Question (PDQ) in a small rural hospice setting.
DESIGN: Prospective study.
SETTING: The 5-bed Algonquin Grace Hospice in Huntsville, Ont.
PARTICIPANTS: Nineteen patients who met the research criteria and who were admitted to the hospice from September 2015 to December 2016.
METHODS: Participants completed the Patient Dignity Inventory and modified versions of the Edmonton Symptom Assessment Scale and Integrated Palliative Care Outcome Scale before and after the PDQ interviews.
MAIN FINDINGS: While each of the 19 PDQ interviews was unique, there were many consistencies regarding accomplishments (eg, being a good parent), hopes (eg, one's need of being respected), and fears (eg, concerns about pets) that emerged from participants' stories. Hospice staff found the documents from PDQ interviews to be very valuable in their understanding of patients. Staff and patients unanimously wanted the program to continue. An unexpected benefit was the response of the patients' families who were deeply moved by the legacy documents, often sharing them following their family member's death.
CONCLUSION: The PDQ is a dignity-conserving intervention that serves as a meaningful end-of-life legacy document that benefits patients, staff, and families. Using the PDQ at the hospice helped patients feel truly heard, and increased caregivers' compassion and understanding of patients' needs.
Background: The 3 Wishes Project (3WP) is an end-of-life program that aims to honor the dignity of dying patients by creating meaningful patient- and family-centered memories while promoting humanistic interprofessional care.
Objective: To determine whether this palliative intervention could be successfully implemented-defined as demonstrating value, transferability, affordability, and sustainability-beyond the intensive care unit in which it was created.
Design: Mixed-methods formative program evaluation. (ClinicalTrials.gov: NCT04147169).
Setting: 4 North American intensive care units.
Participants: Dying patients, their families, clinicians, hospital managers, and administrators.
Intervention: Wishes from dying patients, family members, and clinicians were elicited and implemented.
Measurements: Patient characteristics and processes of care; the number, type, and cost of each wish; and semistructured interviews and focus groups with family members, clinicians, and managers.
Results: A total of 730 patients were enrolled, and 3407 wishes were elicited. Qualitative data were gathered from 75 family members, 72 clinicians, and 20 managers or hospital administrators. Value included intentional comforting of families as they honored the lives and legacies of their loved ones while inspiring compassionate clinical care. Factors promoting transferability included family appreciation and a collaborative intensive care unit culture committed to dignity-conserving end-of-life care. Staff participation evolved from passive support to professional agency. Program initiation required minimal investment for reusable materials; thereafter, the mean cost was $5.19 (SD, $17.14) per wish. Sustainability was demonstrated by the continuation of 3WP at each site after study completion.
Limitation: This descriptive formative evaluation describes tertiary care center-specific experiences rather than aiming for generalizability to all jurisdictions.
Conclusion: The 3WP is a transferrable, affordable, and sustainable program that provides value to dying patients, their families, clinicians, and institutions.
Primary Funding Source: Greenwall Foundation.
Les justifications apportées à la dépénalisation de l’euthanasie ou du suicide assisté mettent en jeu au moins trois concepts éthiques : la dignité, la liberté et la compassion. Après quelques brèves considérations à propos de l’usage de la dignité et de la liberté dans les débats présents, nous examinerons la pertinence d’un appel à la compassion en essayant de donner à cette notion une cohérence qui souvent lui fait défaut.
BACKGROUND: Preserving terminally ill patients' dignity and well-being through dignified and holistic care has become the overarching goal in palliative care services. However, dignity is a multifaceted concept with a wide range of interpretations under different cultural contexts.
AIM: The aim of this review is to understand the variations in subjective interpretations and constitutions of dignity in palliative or end-of-life care via an integrative worldview.
DESIGN: This systematic review adhered to the Preferred Reporting Items for Systematic Reviews and Meta-Analyses guideline and used SPIDER tool to screen for appropriate and relevant articles for analysis.
DATA SOURCES: Four major databases were searched including CINAHL, ERIC, Medline, and PsycARTICLES between 2009 and 2018. Forty-eight qualitative studies that examined dignity from the perspectives of patients, family caregivers, and health-care professionals were selected for full text data analysis using thematic synthesis.
RESULTS: Analysis of the various concepts of dignity revealed 18 themes that were further categorized into 7 conceptual categories: (1) self-determination, (2) existential liberty, (3) relational connectedness, (4) caregiving revitalization, (5) mindful humanity, (6) patient-family care, and (7) sustainable culture. These 7 categories span across individual, familial, and institutional dimensions, forming a new Dynamic Reciprocity of Dignity model.
CONCLUSIONS: The Dynamic Reciprocity of Dignity model highlights the importance of adopting a systemic lens to address dignity-related needs and concerns at the end of life, while providing insights on how compassionate care and self-compassion can serve as the foundation of dignified care, which in turn serve as a buffer against patients' existential suffering as well as caregivers' burnout and fatigue. Recommendations for clinical practice and future research directions are discussed.
Dans le débat sur la fin de vie qui anime la société française, le citoyen est sommé d’avoir un avis bien tranché et de dire si, oui ou non, il est favorable à l’euthanasie. Mais sommes-nous bien "armés" pour penser la fin de vie ? Connaissons-nous les implications éthiques, les droits du patient et des familles, les dispositions légales autour des obligations des médecins et des soins palliatifs ?
En clarifiant, de façon méthodique et pédagogique, les notions fondamentales de finitude, souffrance, dignité et liberté, Jacques Ricot permet à chacun de mieux comprendre tous les enjeux philosophiques, sociétaux et juridiques de la fin de vie.
Dans cette 2e édition entièrement revue, l’auteur poursuit sa réflexion éthique en proposant plusieurs enseignements autour de la vie et de la mort de Vincent Lambert et en décrivant l’évolution récente du débat sur la légalisation de l’euthanasie.
Le philosophe s'attache à définir ce qu'est la vulnérabilité et quels liens elle entretient avec la dignité de chaque homme. Qu'est-ce qui fait la valeur d'un homme : sa vulnérabilité ou sa manière de la surmonter ? Ou alors ce n'est ni l'un, ni l'autre ?
Discussions about assisted suicide have hitherto been based on accounts of dignity conceived only as an inherent value or as a status; accounts of dignity in which it appears as a (contingent) attitude, by contrast, have been neglected. Yet there are two good reasons to consider dignity to be an attitude. First, this concept of dignity best allows us to grasp a crucial aspect of everyday language: people often express fears of losing their dignity-and it is not possible to explain this with an account in which dignity is inherent. Second, such a concept allows us to adduce new argumentation where the argument based on status ends. Dignity considered as a status provides grounds to argue for the moral permissibility of assisted suicide, in the sense that in such an account individuals possess the normative power to waive their right to life. But the question then remains of how to decide what counts as a good reason for assisted suicide-and this is where an argument based on dignity as an attitude can provide illumination.
Comment en sommes-nous arrivés, comme société, à envisager de proposer « la mort donnée » comme un service légal au titre de la liberté et de la dignité des hommes ? Cette « césarienne de la mort » qui consisterait à faire mourir les gens à l’heure dite, sur rendez-vous, de façon médicalisée et réglée (comme on parle de la chirurgie réglée face à la chirurgie d’urgence). Cédant à la tentation de nous rendre maître de la mort en la provoquant par anticipation. Parce qu’à une vision globale de la vie humaine, nous substituons une vision morcelée, réduite à des particules élémentaires, fournie par la numérisation de l’univers.
The studies on terminally ill patients' dignity as perceived by health care providers (HCPs) in palliative care are growing. The comparison of different HCPs' perspectives in particular is necessary to explore how HCPs perceive patients' dignity in order to promote reflection on this core issue. This study aimed to investigate the perspectives on end-of-life patients' sense of dignity among four different categories of professionals: nurse assistants, nurses, psychologists, and physicians. A sample of 306 HCPs completed the Patient Dignity Inventory-Italian Version (PDI-IT) adapted for them and an ad hoc semi-structured written interview. Their responses were then analyzed using frequencies of the answers to the PDI-IT, a multivariate analysis of variance, Pearson's correlation index, t tests, and content analysis. All HCPs scored the relevance to the dignity-related physical aspects highly, followed by the psychological distress. Nurse assistants and nurses provided higher scores on the psychological and existential and spiritual PDI subscales than the other HCP groups. The social sphere was evaluated as the least salient for the patients' sense of dignity. Physicians who attended a course on dignity considered the psychological and existential dignity dimensions more. Differences in role and expertise could lead to different HCPs' perspectives on dignity, while the multidisciplinary work could favor their aligning. Therefore, it is essential to encourage HCPs' communicative exchange and reflective awareness through training, i.e., courses, seminars, and focus groups. These developments could promote increasingly adequate patient-centered care.
OBJECTIVES: The review aims to identify available evidence related to the effects of dignity therapy on dignity, psychological well-being, and quality of life (QoL) among patients with cancer under palliative care.
METHODS: Thirteen electronic databases were searched for published articles in English or Chinese from inception to May 2018. Methodological rigour was assessed through the Joanna Briggs Institute (JBI) checklist for randomised controlled trials and quasi-experimental studies. Sufficient data from four trials were statistically pooled with Review Manager; otherwise, a narrative summary was used.
RESULTS: Ten articles describing eight studies met the selection criteria and were included in the review. None of the studies met all JBI checklist criteria. Meta-analysis results revealed that dignity therapy significantly improved dignity-related distress in existential distress domain (mean differences [MD]: -0.26, 95% CI, -0.50 to -0.02, .03) and social support domain (MD: -0.23, 95% CI, -0.39 to -0.07, .004), but nonsignificant improved depression and anxiety. Narrative summaries indicated that dignity therapy exerted positive effects on patients' dignity, psychological well-being, and QoL.
CONCLUSIONS: Dignity therapy is a promising approach to improve psychological well-being among patients with cancer under palliative care. However, the effects of dignity therapy on dignity and QoL are inconsistent. Further extensive studies should measure the impact of dignity therapy through qualitative and quantitative approaches to establish outcomes in psychological well-being. Studies with sensitivity to the cultural context within which dignity therapy applied should be conducted to explore its effects on patients with cancer at the early stages of illness trajectory.