The following self-analysis contains key experiences of maternal grief over the course of the first 2 years following the death of a child, with specific examples and observations from bereaved mothers shared with the author. The references provide supporting evidence for commonality of the lived experience and observations. Therapeutic responses for clinicians give concrete direction for providing effective comfort. Self-care suggestions for mothers provide specific guidance for the readers. A 14-year retrospective epilogue puts the charged emotional description into a context of healing.
BACKGROUND: Caregivers often avoid involving people with intellectual disability in end-of-life discussions and activities. One reason is fear that the person may become upset or psychologically harmed.
METHODS: Pre and post a 6-month intervention about end of life, we assessed depression, anxiety, and fear of death among intervention (n = 24) and comparison (n = 20) participants with intellectual disability. End-of-life 'encounters' (conversations/activities about end of life) were monitored, including comfort ratings.
RESULTS: Overall, 79% of encounters were rated very comfortable/somewhat comfortable. Participants initiated 69% of encounters. There was no significant pre-post change in depression or fear of death. Anxiety improved significantly.
CONCLUSIONS: This is the first controlled, longitudinal study providing robust evidence about whether discussing end of life leads to emotional discomfort or psychological harm. Data showed adults with intellectual disability can safely engage in conversations/activities about end of life. The high percentage of participant-initiated encounters showed participants wanted to talk about end of life.
BACKGROUND: Parents with advanced cancer struggle initiating conversations with their children about the cancer. When parents do not have the tools to talk with their children, they silently watch their children attempt to navigate their illness but can only wonder but not know what their children are thinking. The objective of the current study is to describe, from parents living with advanced cancer, the worries and concerns parents wonder their child holds, but has not spoken, about the parent's cancer.
METHODS: Twenty-seven parents with incurable cancer enrolled in a 5 session telephone intervention pilot study during which they were asked, "What questions do you have about what your child is thinking or feeling about the cancer?" Data were transcribed and inductively coded using content analysis methods adapted from grounded theory.
RESULTS: Analysis yielded 14 categories of parent concerns organized into 6 larger conceptual domains: Being Concerned and Scared about My Cancer; Worrying about Me; Changing How We Talk and Live Day-to-Day; Not Knowing What Will Happen; Having Unanswered Questions about My Cancer; and Understanding My Disease Is Terminal.
CONCLUSIONS: Study results add to our understanding of the magnitude of the emotional burden parents with advanced cancer carry as they struggle to balance their diagnosis and treatment and their life as parents.
Entretien avec trois professionnelles du funéraire, et en particulier de la crémation, à propos des rites mis en oeuvre dans le cadre de leur intervention. Quel est l'impact de l'accomplissement de rites funéraires dans le déroulement du deuil ? Des directives du défunt sur le devenir de son propre corps et la conduite de la cérémonie ? Du devenir des cendres ?
Cet ouvrage aborde la question délicate des frères et soeurs d'enfant gravement malade ou atteint d'un handicap. Des membres de fratries témoignent de leur vécu et des émotions qui les traversent. En parallèle, des experts apportent des pistes de réflexion afin de mieux répondre aux besoins affectifs et relationnels de ces enfants.
In the last decade, scientific literature provided solid evidence of cognitive deficits in amyotrophic lateral sclerosis (ALS) patients and their effects on end-life choices. However, moral cognition and judgment are still poorly investigated in this population. Here we aimed at evaluating both socio-cognitive and socio-affective components of moral reasoning in a sample of 28 ALS patients. Patients underwent clinical and neuropsychological evaluation including basic cognitive and social cognition measures. Additionally, we administered an experimental task including moral dilemmas, with instrumental and incidental conditions. Patients' performances were compared with a control group [healthy control (HC)], including 36 age-, gender-, and education-matched healthy subjects. Despite that the judgment pattern was comparable in ALS and HC, patients resulted less prone to carry out a moral transgression compared to HC. Additionally, ALS patients displayed higher levels of moral permissibility and lower emotional arousal, with similar levels of engagement in both instrumental and incidental conditions. Our findings expanded the current literature about cognitive deficits in ALS, showing that in judging moral actions, patients may present non-utilitarian choices and emotion flattening. Such a decision-making profile may have relevant implications in applying moral principles in real-life situations and for the judgment of end-of-life treatments and care in clinical settings.
In the span of five years, my father, brother and mother died. I was close in both emotional and physical proximity to all three. In this role, I witnessed their struggle for dignity at the end of life in whatever manner was left to them. This was made more difficult as they shuffled through the hospital-nursing home-rehabilitation center-home health continuum of care. The patient enters one of those entry points, then seems to ricochet between them. This is an account of how illness and pain erased the life force from my loved ones while I watched helplessly from the sidelines. The emotional toll of seeing their decline was hard to calculate but what of the cost to the one who is dying? And yet each sought to carve some space to imprint their unique spark on their final days even when they had lost the ability to communicate coherently.
In this paper we, twin sisters, present a joint autoethnographic account of providing end of life care for our mum who had terminal cancer. Using the theoretical framing of performance from Goffman's theory of Dramaturgy, we present the findings from a joint autoethnography, focusing on two key themes: performing emotion work and performing what we conceptualise as ‘dignity work’. This paper's contributions are twofold. First, conceptually, this paper offers an important contribution to literature concerned with the sociology of illness, by critically engaging with Goffman's notion of frontstage and backstage performance, applied to the context of home care provided by family carers. The second contribution of this paper is methodological; we promote the under-utilised approach of a joint autoethnography and argue for its usefulness in the context of end of life care. We contend that the process of writing this paper was emotionally challenging, yet arriving at the final paper, which serves as a legacy of our mum, was cathartic. We argue for the usefulness of written diaries as a backstage arena through which other informal carers can think through, and come to terms with, experiences of death and dying.
Death, bereavement, and grief are part of everyone's life experience. In the last few decades, media and social network platforms gradually began to influence people's ways of perceiving and coping with death and dying, and the research on the phenomenon of digital death is growing. Facebook is one of the most known and used social networks, and one of the few that developed specific measures to manage the profile pages of the deceased users. Based on these premises, this survey aimed to investigate how 1281 Italian participants, aged 14-77 years old, approach death on Facebook with respect to their opinions, attitudes, and emotional reactions, through an ad-hoc online survey. The results highlight how the participants seem to have different attitudes and emotions toward death, grief and mourning on the social network platform. The age of the participants seems to influence the use of the social network and the attitudes and the emotions toward the topic of investigation. Moreover, for this Italian sample, the custom of grieving and commemorating on social media is starting to spread along with the usual cultural practices without replacing them.
Background: Cognitive prognostic awareness (PA) and emotional preparedness for a loved one's death are distinct but related phenomena. However, the distinction between these two concepts has not been studied in family caregivers.
Objective: To examine whether these two concepts are distinct by comparing their evolution and predictors over cancer patients' last year.
Methods: Agreement between emotional preparedness for death and cognitive PA was longitudinally evaluated for 309 family caregivers by percentages and kappa coefficients. Predictors of the two outcomes were evaluated by multivariate logistic regression models with the generalized estimating equation.
Results: Agreement between family caregivers' emotional preparedness for death and cognitive PA decreased slightly (54.73%-43.64%) from 181-365 to 1-30 days before the patient's death, with kappa values (95% confidence interval) from -0.060 (-0.123 to 0.003) to 0.050 (-0.074 to 0.174), indicating poor agreement. Participants were more likely to report adequate emotional preparedness for death if they had financial sufficiency, more contact/communication with the patient, lower caregiving burden, and stronger perceived social support. Family caregivers were more likely to have accurate PA if they were 56-65 years old, the patient's adult child, and had more contact/communication with the patient and greater subjective caregiving burden.
Conclusions/Implications: Family caregivers' emotional preparedness for death and cognitive PA were distinct, as supported by their poor agreement, lack of reciprocal associations, and two different sets of predictors. Health care professionals should facilitate family caregivers' accurate PA and cultivate their emotional preparedness for death by enhancing patient-family contact/communication and easing their caregiving burden to improve quality of end-of-life care.
Objectif : Cette étude vise à développer des axes de réflexion concernant la fin de vie et ainsi mieux comprendre les facteurs éthique et émotionnel en jeu dans la prise de décision chez le médecin travaillant en soins palliatifs et plus particulièrement dans une situation où il est question d’une limitation et/ou arrêt de traitement (LAT).
Méthode: La réflexion éthique et le vécu émotionnel de 10 médecins, exerçant en services ou en équipes mobiles de soins palliatifs dans la région Auvergne-Rhône-Alpes, ont été évalués par auto-questionnaire.
Résultats: Dans un contexte de prise de décision de LAT, les médecins ont estimé que la réflexion éthique a un impact sur leur prise de décision dans leur pratique professionnelle en général mais également dans leur dernière situation de LAT. Les résultats diffèrent concernant le vécu émotionnel, 80 % des médecins ont pensé que le vécu émotionnel jouait un rôle dans leur pratique professionnelle générale. En revanche, 70 % des médecins considèrent que leur vécu émotionnel n’a pas influencé la prise de décision lorsqu’ils sont interrogés plus spécifiquement sur la dernière situation clinique où il était question d’une LAT.
Conclusion : Les médecins considèrent que la réflexion éthique est bien présente et semble indispensable pour garder, au centre de la décision, le patient dans son unicité. Au vu des résultats, la prise de décision de LAT semble faire ressentir des émotions fortes à ces médecins qui paraissent difficilement identifiables et exprimables.
CONTEXT: Advancing the science of serious illness communication requires methods for measuring characteristics of conversations in large studies. Understanding which characteristics predict clinically important outcomes can help prioritize attention to scalable measure development.
PURPOSE: To understand whether audibly recognizable expressions of distressing emotion during palliative care serious illness conversations are associated with ratings of patient experience or 6-month enrollment in hospice.
METHODS: We audio-recorded initial palliative care consultations involving 231 hospitalized people with advanced cancer at two large academic medical centers. We coded conversations for expressions of fear, anger and sadness. We examined the distribution of these expressions and their association with pre-post ratings of Feeling Heard & Understood and 6-month hospice enrollment following the consultation.
RESULTS: Nearly 6 in 10 conversations included at least one audible expression of distressing emotion (59%; 137/231). Among conversations with such an expression, fear was the most prevalent (72%; 98/ 137) followed by sadness (50%; 69/ 137) and anger (45%; 62/137). Anger expression was associated with more disease-focused end-of-life treatment preferences, pre-post consultation improvement in feeling heard & understood and lower 6-month hospice enrollment. Fear was strongly associated with pre-consultation patient ratings of shorter survival expectations. Sadness did not exhibit strong association with patient descriptors or outcomes.
CONCLUSION: Fear, anger and sadness are commonly expressed in hospital-based palliative care consultations with people who have advanced cancer. Anger is an epidemiologically useful predictor of important clinical outcomes.
Context: Responding to emotion cues is an essential skill for communicating with patients and families, but many health care trainees have difficulty applying this skill within the context of a complex conversation.
Objectives: We created an original online module to facilitate deliberate practice of a three-skill framework for responding to emotion cues during complex or nonlinear serious illness conversations.
Methods: Our original online module uses a gamebook format, which prompts trainees to engage in focused and repetitive practice of three well-defined skills for responding to emotion cues in a simulated family conference. We implemented the module as a part of a communication skills curriculum for interns rotating in the intensive care unit. After completing the module, all interns answered an open-ended survey question about their perceived skill acquisition. Results were analyzed by a qualitative method and coded into themes.
Results: About 71% of interns (n = 65 of 92) completed the online module and open-ended survey question. About 89% of participants responded that they would use a naming, understanding, respecting, supporting, or exploring statement in response to an emotion cue. Nearly two-thirds of participants articulated their rationale for using naming, understanding, respecting, supporting, or exploring statements (e.g., preparing patients to process complex medical information, eliciting information about patient perspective.)
Conclusion: Our online emotion cue module is a novel tool for deliberate practice of advanced skills for responding to emotion cues in serious illness conversations. In future studies, we will investigate whether our module's efficacy is enhanced by using it as a part of a flipped classroom curriculum with an in-person simulation session.
Context: Cancer is a life-changing diagnosis accompanied by significant emotional distress, especially for children with advanced disease. However, the content and processes of discussing emotion in advanced pediatric cancer remain unknown.
Objectives: To describe the initiation, response, and content of emotional communication in advanced pediatric cancer.
Methods: We audiorecorded 35 outpatient consultations between oncologists and families of children whose cancer recently progressed. We coded conversations based on Verona Coding Definitions of Emotional Sequences.
Results: About 91% of conversations contained emotional cues, and 40% contained explicit emotional concerns. Parents and clinicians equally initiated cues (parents: 48%, 183 of 385; clinicians: 49%) and concerns (parents: 51%; clinicians: 49%). Children initiated 3% of cues and no explicit concerns. Emotional content was most commonly related to physical aspects of cancer and/or treatment (28% of cues and/or concerns, present in 80% of conversations) and prognosis (27% of cues and/or concerns, present in 60% of conversations). Clinicians mostly responded to emotional cues and concerns implicitly, without specifically naming the emotion (85%). Back channeling (using minimal prompts or words that encourage further disclosure, e.g., uh-huh) was the most common implicit response that provided space for emotional disclosure (32% of all responses). Information advice was the most common implicit response that reduced space for further emotional disclosure (28%).
Conclusion: Emotional communication in advanced pediatric cancer appears to be a subtle process where parents offer hints and clinicians respond with non-emotion-laden statements. Also, children were seldom engaged in emotional conversations. Clinicians should aim to create an environment that allows families to express emotional distress if and/or when ready.
This study aimed to identify the relationships of perception of hospice and palliative care with emotional intelligence and cognitive empathy in nursing students. The participants were 458 nursing students. Data were collected using structured questionnaires and analyzed with Pearson correlation coefficients, independent-samples t test, and binary logistic regression. Perception of hospice and palliative care was significantly and positively correlated with emotional intelligence (r = 0.224, P < .001) and cognitive empathy (r = 0.311, P < .001). Mean score differences of perception of hospice and palliative care by emotional intelligence and cognitive empathy were statistically significant (t = -3.973, P < .001; t = -4.109, P < .001, respectively). Logistic regression yielded an odds ratio of 1.860 (P < .001; 95% confidence interval, 1.283-2.698) between the perception of hospice and palliative care and emotional intelligence and an odds ratio of 2.028 (P < .001; 95% confidence interval, 1.394–2.951) between the perception of hospice and palliative care and cognitive empathy. Emotional intelligence and cognitive empathy should be cultivated to raise nursing students' perception of hospice and palliative care and must be included when developing related curricula and extracurricular programs.
Elisabeth Kübler-Ross' seminal 1969 work, On Death and Dying, opened the door to understanding individuals' emotional experiences with serious illness and dying. Patient's emotions, however, are only half the story in the patient-physician relationship. In recent years physicians' emotional reactions have gotten more attention. These sometimes-unacknowledged emotions influence how we approach our work, including life and death decisions. This article reviews some of the main emotions physicians experience when caring for seriously ill and dying patients and the challenges physicians face in regulating their emotions in a professional setting. We also discuss some of the ways that physician emotion may influence medical decision-making and contribute to conflict. Attention to the emotional level of physician experience may promote better care.
Although burnout syndrome has been investigated in depth, studies specifically focused on palliative home care are still limited. Moreover, there is still a lack of evidence regarding the interplay between emotional flexibility and sensitivity to context in preventing burnout in home care settings. For these reasons, the aims of this study were to examine burnout symptoms among practitioners specializing in palliative home care and to investigate the role of regulatory flexibility and sensitivity to context in understanding burnout. An exploratory cross-sectional design was adopted. A convenience sample (n = 65) of Italian specialist palliative care practitioners participated in this study. Participants were recruited between February and April 2019 from two palliative home care services that predominantly cared for end-of-life cancer patients. The Italian version of the Maslach Burnout Inventory (MBI), the Flexible Regulation of Emotional Expression (FREE) scale (a measure of emotional flexibility), and the Context Sensitivity Index (CSI) (a measure of sensitivity to context) were administered. Analyses of variance were conducted using the three MBI factors as dependent variables and profession as an independent variable. Subsequently, three identical analyses of covariance were conducted with age, work experience, flexibility and sensitivity to context as covariates. The results showed a low burnout risk for all three of the MBI factors, and there were no gender differences. An ANOVA revealed a significant effect of profession type and age on the emotional exhaustion factor of the MBI, and an ANCOVA indicated that these effects persisted after covariates were accounted for. The results also showed a significant effect of the FREE score on emotional exhaustion. These findings can help explain the differential contributions of profession type and age to the burnout symptoms investigated. In addition, the emotional flexibility component, as an aspect of resilience, represents a significant and specific factor of emotional exhaustion. Interventions to prevent burnout must consider these relationships.
Prolonged grief disorder, characterized by severe, persistent, and disabling grief, has recently been included in the International Classification of Diseases-11 (ICD-11). Emotional disturbances are central to such complicated grief responses. Accordingly, emotion regulation is assumed critical in the development, persistence and treatment of complicated grief. Yet, a comprehensive review on this topic is lacking. We conducted a systematic review (PROSPERO: CRD42017076061) searching PsychInfo, Web of Science and PubMed to identify quantitative research examining relationships between emotion regulation and complicated grief. Sixty-four studies on 7715 bereaved people were identified, focusing on a variety of emotion regulation strategies (i.e., experiential avoidance, behavioral avoidance, expressive suppression, rumination, worry, problem solving, cognitive reappraisal, positive thought, and mindfulness). Our synthesis showed strong evidence that experiential avoidance and rumination play a role in the persistence of complicated grief. More generally, surveys support positive associations between putative maladaptive emotion regulation strategies and complicated grief, and negative associations between putative adaptive emotion regulation strategies and complicated grief. Laboratory research yielded mixed results. Emotion regulation is critical in complicated grief, and in particular experiential avoidance and rumination form important targets in complicated grief treatments. We advise expanding current knowledge, by employing more advanced, intensive data collection methods and experiments across diverse samples. Increasing knowledge in this domain will improve clinical practice.
Caring for dying patients is often a new experience for ICU residents. End-of-life and palliative training in medical schools is lacking. Many residents experience troublesome emotions during residency. Literature establishes that residents show lower well-being scores than similar populations. To make emotional wellness a priority for residents, monthly mandatory Palliative Care Rounds (PCR) were established in the ICU. The role of the Palliative Care Social Worker (PCSW) is central in planning and implementing PCR. Social workers have unique skills well-suited to this type of activity in an acute care setting. Residents present cases and the PCSW facilitates discussion to explore complex emotions helping residents process their feelings. Forty-five residents responded to a seven-item questionnaire, out of 70 potential resident respondents (64% response rate). Only 60% said they learned about end-of-life and its emotional aspects in medical school. Ninety-eight percent reported the PCR helped them be more aware of their feelings, and would recommend it to colleagues. Ninety-five percent said PCR are important for interns and residents to help them grow professionally and become better clinicians. Through the process of dissecting their emotions, PCR allows for personal and professional growth that improves residents’ ability to become empathic providers.