Objectif: Étudier la relation entre la détresse et la confusion mentale chez les patients en situation palliative afin d’apporter une prise en charge adaptée à cette situation complexe et fréquente en fin de vie.
Méthodes: C’est une étude quantitative observationnelle, prospective et multicentrique réalisée auprès de patient en situation palliative. Les équipes de chaque structure incluaient les patients et réalisaient des évaluations à l’aide d’un formulaire visant à renseigner l’intensité de la détresse ressenti par le patient, à l’aide de la Distress Thermometer auto-évaluée puis hétéro-évaluée, et la présence ou non d’une confusion à l’aide de la Nu-DESC. En outre, il était rapporté la prise ou non des prescriptions médicamenteuses anticipées ainsi que toutes les caractéristiques épidémiologiques du patient.
Résultats: Nous avons pu inclure 51 patients et réaliser 467 entretiens. Aucune relation n’a été mise en évidence entre la détresse et la confusion sur tous les entretiens confondus. Par contre, une relation faible à modérée a été mise en évidence au premier entretien. La confusion a tendance à augmenter à l’approche du décès alors qu’aucune relation n’a pu être mise en évidence entre la détresse et la date du décès.
Conclusion: Ces résultats questionnent sur le ressenti des patients confus puisqu’il n’a pas été mis en évidence que la confusion engendre une détresse plus importante chez ces patients sur tous les entretiens.
De plus en plus souvent, nous entendons parler d'euthanasie : que ce soit par les médias, par les politiques, par les services publics ou par diverses associations, la thématique est sur toutes les langues.
Cependant, force est de constater que le sujet est bien souvent abordé avec méconnaissance ou parti pris. Mon souhait est donc d'intervenir dans cet ouvrage pour décrire le plus fidèlement possible la très dure réalité qui entoure le processus d'euthanasie.
Non, la vie dans nos hôpitaux n'est pas - ou n'est plus - un long fleuve tranquille. Elle est en crue permanente, avec de nombreux débordements quotidiens. En tant que membre du personnel soignant, je constate combien il nous est difficile à nous, infirmiers, médecins, psychologues, assistants sociaux, de garder la tête hors de l'eau, lorsqu'il est question de ce qu'on appelle pompeusement "éthique".
Introduction: Custody concerns are a major source of psychosocial distress among single parents with life-limiting illness. Although children are increasingly living in diverse household structures, the current health care system is not designed to meet the unique needs of single parents or nontraditional families. Patients with unaddressed custody concerns can experience psychological suffering during treatment and at the end of life. Lack of clarity and resolution regarding guardianship may also result in additional hardship for their grieving children.
Case Description: We present the case of a 36-year-old-female with metastatic breast cancer, who was the single mother of four children. Despite significant concerns about her children's well-being, the patient did not complete legal guardianship processes. She experienced immense distress at the end of her life due to an unresolved custody plan.
Discussion: This case demonstrates the need for addressing custody and guardianship concerns with seriously ill patients early in the illness trajectory. While clinicians need not become experts on custody and guardianship themselves, understanding the impact of custody concerns-and the barriers to their resolution-can substantially improve end-of-life care for patients and better equip surviving family for the changes that lie ahead.
Conscientious objection has become a divisive topic in recent bioethics publications. Discussion has tended to frame the issue in terms of the rights of the healthcare professional versus the rights of the patient. However, a rights-based approach neglects the relational nature of conscience, and the impact that violating one's conscience has on the care one provides. Using medical assistance in dying as a case study, we suggest that what has been lacking in the discussion of conscientious objection thus far is a recognition and prioritising of the relational nature of ethical decision-making in healthcare and the negative consequences of moral distress that occur when healthcare professionals find themselves in situations in which they feel they cannot provide what they consider to be excellent care. We propose that policies that respect the relational conscience could benefit our healthcare institutions by minimising the negative impact of moral distress, improving communication among team members and fostering a culture of ethical awareness. Constructive responses to moral distress including relational cultivation of moral resilience are urged.
Some of the most ethically challenging and emotionally demanding aspects of nursing occur in caring for patients and their family at the end of life. The aims of this study were to examine the views of acute care nurses caring for patients during transition to comfort care, to describe the personal impact on nurses, and to identify nurses’ strategies for self-support and development of competence. Using a qualitative descriptive approach, we analyzed data from 26 semistructured interviews.
Nurses experienced moral distress in situations of continuing treatment when a cure was unlikely. In managing symptoms for patients, they struggled to foster an often-tenuous balance of patient comfort and calm without oversedation. They struggled to manage the competing demands of a workload including patients receiving curative care juxtaposed with those focused on comfort care. Nurses reflected on their fears as new nurses caring for end-of-life patients, the inadequacy of their preparation for this role, and their distress when the care provided felt inadequate to them.
Nurses navigated challenges through support from nurse colleagues and effective leaders. They appealed to administrators to attend to care concerns arising from time-intensive nature of care. Mentoring and education facilitated assimilation to comfort-care nursing for novice nurses.
BACKGROUND: This study prospectively evaluated distress, depressive and anxiety symptoms as well as associated factors in family caregivers (FC) of advanced cancer patients at initiation of specialist inpatient palliative care.
METHODS: Within 72 h after the patient's first admission, FCs were asked to complete German versions of the Distress Thermometer, Generalized Anxiety Disorder 7-item scale (GAD-7), Patient Health Questionnaire depression module 9-item scale (PHQ-9) for outcome measure. Multivariate logistic regression analyses were used to identify associated factors.
RESULTS: In 232 FCs (62% spouses/partners), mean level of distress was 7.9 (SD 1.8; range, 2-10) with 95% presenting clinically relevant distress levels. Most frequent problems were sadness (91%), sorrows (90%), anxiety (78%), exhaustion (77%) and sleep disturbances (73%). Prevalence rates of moderate to severe anxiety and depressive symptoms were 47 and 39%, respectively. Only 25% of FCs had used at least one source of support previously. In multivariate regression analysis, being female (OR 2.525), spouse/partner (OR 2.714), exhaustion (OR 10.267), and worse palliative care outcome ratings (OR 1.084) increased the likelihood for moderate to severe anxiety symptom levels. Being female (OR 3.302), low socio-economic status (OR 6.772), prior patient care other than home-based care (OR 0.399), exhaustion (OR 3.068), sleep disturbances (OR 4.183), and worse palliative care outcome ratings (OR 1.100) were associated with moderate to severe depressive symptom levels.
CONCLUSIONS: FCs of patients presenting with indication for specialist palliative care suffer from high distress and relevant depressive and anxiety symptoms, indicating the high need of psychological support not only for patients, but also their FCs. Several socio-demographic and care-related risk-factors influence mental burden of FCs and should be in professional caregivers' focus in daily clinical practice.
Background: Crises that occur in home hospice care affect family caregivers’ satisfaction with care and increase risk of disenrollment. Because hospice care focuses on achieving a peaceful death, understanding the prevalence and nature of crises that occur in this setting could help to improve end-of-life outcomes.
Objective: To ascertain the prevalence and nature of, as well as factors associated with crises in the home hospice setting as reported by family caregivers.
Design: A multiple-method approach was used. Content analysis was employed to evaluate semistructured interview responses collected from caregivers. Potential associations between crisis occurrence and caregiver and patient factors were examined.
Setting/Subjects: Family caregivers whose care recipients were discharged (dead or alive) from a nonprofit hospice organization.
Measurements: Participants were asked to identify any crisis—defined as a time of intense distress due to a physical, psychological, and/or spiritual cause—they or the patient experienced, while receiving home hospice care.
Results: Of the 183 participants, 76 (42%) experienced a perceived crisis, while receiving hospice care. Three types of crises emerged: patient signs and symptoms (n = 51, 67%), patient and/or caregiver emotional distress (n = 22, 29%), and caregiver burden (n = 10, 13%). Women were more likely than men (46% vs. 26%, p = 0.03) to report a crisis.
Conclusions: A large minority of caregivers report perceiving a crisis while their loved one was receiving home hospice care. Physical (symptoms), psychological (emotional distress) function, and caregiver burden constituted the crises reported. Further studies are needed to better understand and address these gaps in care.
BACKGROUND: The distress of patients suffering from a terminal illness can lead to a state of despair and requests for euthanasia and assisted suicide. It is a major challenge for palliative care workers. The Distress Thermometer (DT) is recommended by the National Comprehensive Cancer Network as a means of more easily assessing distress. It is available as a Self-assessment reported Distress Thermometer, but for a wider use in palliative care it should also be implemented in the form of a clinician-reported outcome (clinRO). Clinicians need to rate patient's distress when the patient is not able to do so (subject that cannot be addressed, defensive patient…). The primary aim of the quantitative study was to assess the validity of the Clinician-Rated Distress Thermometer in palliative care.
METHOD: The assessments were performed by teams working in three palliative care centres. The primary endpoint was concordance between the patient and clinicians’ responses via Lin’s concordance coefficient. Eligible patients were aged 18 years or older, suffering from a severe disease in the palliative phase, and with a sufficient level of awareness to consent to participate in the study. A total of 51 patients were recruited, 55% were male, with a mean age of 65.8 years [39–90 years].
RESULTS: Three hundred sixty-four clinician-Rated Distress Thermometer and 467 Self-Reported Distress Thermometer were performed. Only 364 of the 467 Self-Reported Distress Thermometer were used for the study, as investigators did not systematically ask the patient to give an account of his distress. Concordance between patient and clinician responses: The Lin's concordance coefficient with a threshold (alpha) of 5% was 0.46 [0.38; 0.54]. At the first assessment, it was 0.61 [0.44; 0.79]. The Cohen's kappa coefficient was 0.52, with a concordance rate of 79.6%. The sensitivity was 82.9% [66.4-93.4] and the specificity 71.4% [41.9-91.6].
CONCLUSION: The first assessment gave the best results in terms of concordance between Clinician-Rated DT and Self-Reported DT. In the next assessments, the Clinician-Rated DT were less consistent with the patients' Self-Reported DT.
OBJECTIVE: To investigate prevalence and predictors of postloss distress, depressive and anxiety symptoms, and quality of life among bereaved family caregivers of patients with advanced cancer.
METHODS: Prospective multicenter study. Family caregivers (N = 160, mean age 56.8 years, 66% female) completed validated outcome measures (Distress Thermometer, Generalized Anxiety Disorder 7-item scale, Patient Health Questionnaire depression module 9-item scale, SF-8 Health Survey Questionnaire) 6 months after patient's discharge or death at specialist inpatient palliative care ward.
RESULTS: Clinically relevant distress was observed in 82% with sadness (89%), exhaustion (74%), sleeping problems (68%), loneliness (53%), and sorrows (52%) being the most common distress-causing problems. Moderate/severe anxiety and depressive symptoms were observed in 27% and 35%, respectively. Compared to an adjusted norm sample, quality of life was significantly impaired with exception of "bodily pain" and physical component score. Preloss caregiving (odds ratio [OR] 2.195) and higher preloss distress (OR 1.345) predicted high postloss distress. Utilization of psychosocial support services (OR 2.936) and higher preloss anxiety symptoms (OR 1.292) predicted moderate/severe anxiety symptoms, lower preloss physical quality of life (OR 0.952), and higher preloss depressive symptoms (OR 1.115) predicted moderate/severe depressive symptoms.
CONCLUSION: Preloss mental burden showed to be a consistent predictor for postloss burden and should be addressed during palliative care. Future research should examine specific caregiver-directed interventions during specialist palliative care.
BACKGROUND: The need for palliative care in the intensive care unit is increasing. Whether gaps and variations in palliative care education and use are associated with moral distress among critical care nurses is unknown.
OBJECTIVES: To examine critical care nurses' perceived knowledge of palliative care, their recent experiences of moral distress, and possible relationships between these variables.
METHODS: In this quantitative, descriptive study, survey questionnaires were distributed to 517 critical care nurses across 7 intensive care units at an academic health center in Virginia. Validated instruments were used to measure participants' perceptions of palliative care in their practice setting and their recent experiences of moral distress.
RESULTS: A total of 167 completed questionnaires were analyzed. Fewer than 40% of respondents reported being highly competent in any palliative care domain. Most respondents had little palliative care education, with 38% reporting none in the past 2 years. Most respondents reported moral distress during the study period, and moral distress levels differed significantly on the basis of perceived use of palliative care (P = .03). Respondents who perceived less frequent use of palliative care tended to experience higher levels of moral distress.
CONCLUSIONS: Many critical care nurses do not feel prepared to provide palliative care. When palliative care access is perceived as inadequate, nurses may be more apt to experience moral distress. Health system leaders should prioritize palliative care training for critical care nurses and their colleagues and empower them to reduce barriers to palliative care.
The present study examines how meaning and belief in God or god(s) is related to bereavement outcomes. Data from 299 participants residing in the United States indicated that the variables of search for meaning, presence of meaning, and belief in God or god(s) were significantly related to posttraumatic growth, complicated grief, and psychological distress. Results from this study can be used to identify appropriate clinical strategies for mental health practitioners working with bereaved clients and will expand the breadth of literature on bereavement with atheist populations in the United States.
La sédation profonde et continue maintenue jusqu’au décès (SPCMJD) à la demande du patient bouscule les pratiques et mobilise les valeurs soignantes. Nous choisirons d’aborder le lien entre demande de mort anticipée et SPCMJD. Dès lors qu’elle est émise dans le contexte d’une détresse psychologique, comment la penser ? Dans ce contexte la caractérisation du syndrome de démoralisation au moment de la phase terminale nous paraît cliniquement pertinente.
OBJECTIVE: Since February 2016, French Claeys-Leonetti law has recognized patients' right to confront incurable diseases with short-term prognosis and refractory physical or psychological or existential symptoms by requesting continuous deep sedation until death (CDSUD). Determining when psychological or existential distress is refractory and unbearable remains complex and controversial.This review provides a comprehensive thought on CDSUD for advanced incurable patients with refractory psychological and/or existential distress in palliative care settings. It offers guidance on psychiatric or psychological diagnosis for explaining patients' requests for CDSUD.
METHOD: A narrative literature review (2000-2019) was conducted on the MedLine search about the use of palliative sedation in cases of refractory psychological and/or existential distress.
RESULTS: (1) Definitions of "refractory symptom," "refractory psychological distress," and "refractory existential distress" are inconsistent; (2) alternative diagnoses might obscure or be obscured by psycho-existential distress; and (3) criteria on meanings, reasons for requests, decision-making processes, and functions are evolving in practice.
SIGNIFICANCE OF RESULTS: Before implementing CDSUD, palliative healthcare professionals should seek input from psycho-oncologists in palliative care. Mental health professionals should analyze and assess the reasons for psychological and/or existential distress, consider the intentionality processes of requests, and explore alternative diagnoses, such as depressive or adjustment disorders, demoralization syndrome, desire to hasten death, and desire for euthanasia. Therapeutic responses (e.g., pharmacological and psychotherapeutic) should be implemented before deciding that psycho-existential distress is refractory.
OBJECTIVE: To test our hypothesis that an innovative method of early palliative care called "Baby, Attachment, Comfort Interventions" reduces psychological distress in parents of neonates with congenital heart disease.
STUDY DESIGN: Prospective cohort study of parents of neonates with congenital heart disease. Distress was evaluated at admission and discharge using Neonatal Unit Parental Stressor Scale and Depression Anxiety Stress Index-21. Control parents received standard of care. Intervention parents received interdisciplinary interventions aimed at improving neonatal comfort and parenting experience.
RESULTS: Seventy-seven parents participated. Stress decreased in the intervention group (26 parents) but not in the control group (51 parents). There was no decrease in anxiety or depression in either group.
CONCLUSION: Early palliative care reduces stress in parents of neonates with congenital heart disease. Further work is needed to address depression/anxiety in this group of high-risk parents.
End-of-life care in the neonatal intensive care unit (NICU) is one of the most challenging practices for nurses. Negative emotions associated with moral distress often cause care to be incomplete or nurse disengagement. Emotional intelligence in nurses holds potential to address this issue, while improving patient outcomes. The purpose of this study was to critically appraise the evidence about emotional intelligence in nursing and to explore the relationship between emotional intelligence, moral distress in NICU nurses, end-of-life care, and other priority nurse and patient outcomes. A PRISMA (Preferred Reporting Items for Systematic Reviews and Meta-analyses)–structured integrative review was conducted, and CINAHL, Ovid, PubMed, and other databases were searched. Twelve studies were identified as relevant to this review after exclusion criteria were applied. Evidence supports the efficacy of emotional intelligence in bedside nurses as a method of improving key nurse and patient outcomes. Additionally, research suggests that emotional intelligence can be improved by training interventions. Clinical educators should integrate emotional intelligence concepts and strategies into staff training. Further research is recommended to validate previous findings in the NICU setting. Exploration of the relationship between emotional intelligence and moral distress in NICU nurses would provide a foundation for experimental designs to evaluate the effectiveness of emotional intelligence training interventions.
Background: Spirituality is important for many family members of patients in the intensive care unit (ICU). Clinicians without training in spiritual care experience difficulty identifying when family members are experiencing distress of a spiritual nature.
Objective: The purpose of this study was to develop a guide to help clinicians working in the ICU identify family members who may benefit from specialized spiritual support.
Design: ross-sectional study.
Setting/Subjects: A national sample of spiritual health practitioners, family members, and ICU clinicians.
Subjects: A panel of 21 spiritual health practitioners participated in a modified Delphi process to achieve consensus on items that suggest spiritual distress among family members of patients in the ICU through three rounds of remote review followed by an in-person conference and a final round of panelist feedback. Feedback on the final set of items was obtained from an end-user group of four family members and six ICU clinicians.
Measurements: A total of 220 items were iteratively reviewed and rated by panelists. Forty-six items were identified as essential for inclusion and developed into a clinical guide, including an introduction (n = 1), definitions (n = 2), risk factors (n = 10), expressed concerns (n = 12), emotions (n = 7) and behaviors (n = 7) that may suggest spiritual distress, questions to identify spiritual needs (n = 6), and introducing spiritual support (n = 1).
Conclusions: We have developed an evidence-informed clinical guide that may help clinicians in the ICU identify family members experiencing spiritual distress.
OBJECTIVE: Guidelines for palliative and spiritual care emphasize the importance of screening patients for spiritual suffering. The aim of this review was to synthesize the research evidence of the accuracy of measures used to screen adults for spiritual suffering.
METHODS: A systematic review of the literature. We searched five scientific databases to identify relevant articles. Two independent reviewers screened, extracted data, and assessed study methodological quality.
RESULTS: We identified five articles that yielded information on 24 spiritual screening measures. Among all identified measures, the two-item Meaning/Joy & Self-Described Struggle has the highest sensitivity (82-87%), and the revised Rush protocol had the highest specificity (81-90%). The methodological quality of all included studies was low.
SIGNIFICANCE OF RESULTS: While most of the identified spiritual screening measures are brief (comprised 1 to 12 items), few had sufficient accuracy to effectively screen patients for spiritual suffering. We advise clinicians to use their critical appraisal skills and clinical judgment when selecting and using any of the identified measures to screen for spiritual suffering.
The impostor phenomenon (IP) describes the experience of questioning one's abilities and fearing exposure as an intellectual fraud, despite objective evidence of success. The IP has been identified in high-achieving professionals across a variety of disciplines, including clinical medicine, and can be associated with significant anxiety and psychological distress. In this series, we present three authentic cases that demonstrate how the IP may manifest in palliative care practice. Acknowledging the current emphasis on clinician wellness and burnout, we suggest that the IP may be one important source of distress for many early-career clinicians in palliative care. With the physician as the focus of each case, we explore the difficult emotions faced and highlight how palliative care clinicians may be uniquely vulnerable to the IP. We then identify concrete strategies to help clinicians manage feelings of IP and enhance their professional well-being.
Background: Spiritual distress among family members of patients in the intensive care unit (ICU) has not been well characterized. This limits clinicians' understanding of how to best offer support.
Objective: To explore how family members experience spiritual distress, and how it is recognized and support offered within the ICU context.
Design: A qualitative study involving interviews and focus groups between May 2016 and April 2017.
Setting/Subjects: Family members of ICU patients (n = 18), spiritual health practitioners (n = 10), and an interprofessional group of clinicians who work in the ICU (n = 32).
Measurements: Transcribed data were analyzed using interpretive description.
Results: The experience of spiritual distress was variably described by all three groups through concepts, modulators, expressions and manifestations, and ways in which spiritual distress was addressed. Concepts included loss of meaning, purpose and connection, tension in beliefs, and interconnected distress. Modulators were related to the patient and family context, the ICU context, and the relational context. Expressions and manifestations were unique and individual, involving verbal expressions of thoughts and emotions, as well as behavioral manifestations of coping. Clinical strategies for addressing spiritual distress were described through general principles, specific strategies for discussing spiritual distress, and ways in which spiritual support can be offered.
Conclusions: Our study provides a rich description of how spiritual distress is experienced by family members of ICU patients, and how spiritual health practitioners and clinicians recognize spiritual distress and offer support. These findings will help inform clinician education and initiatives to better support families of critically ill patients.
Cet article est le premier d'une série de deux qui abordent l'expérience de la présence d'infirmières en soins palliatifs (SP) dans le cadre de la programmation de recherche SATIN II (Fillion et collab., 2017). Dans cette étude qualitative, nous nous sommes intéressées à l'expérience de la présence telle que vécue et comprise par les infirmières en SP au regard des enjeux actuels du travail en SP au Québec. Huit infirmières qui oeuvraient exclusivement dans un service de SP spécialisés ont été rencontrées. Des entretiens semi-structurés ont été conduits avant et après la participation à une intervention de groupe sur le sens et la pleine conscience offerte dans le cadre de la programmation de recherche SATIN II (Fillion et collab., 2017). Cet article se limite au temps 1 de l'étude. Notre analyse phénoménologique-interprétative (Smith et Osborn, 2007) a révélé que les participantes vivaient et comprenaient initialement la présence comme 1) une mise au diapason et 2) une rencontre avec l'autre et 3) d'un besoin de maîtriser le temps. Notre étude a également démontré que l'expérience de la présence peut (re)donner un sens au travail en SP. Finalement, nous avons pu élaborer une définition de la présence qui pourrait faciliter l'enseignement, l'apprentissage et le développement de la présence chez les infirmières de toutes disciplines.