Adaptant son podcast consacré à la mort, l'auteure brise les tabous autour de la mort, du deuil et des rites funéraires en revenant sur les croyances, les peurs et les fantasmes qui les entourent, dans le monde et à travers l'histoire.
Par peur de la vie, l'homme se soumet à la mort et se laisse domestiquer par elle. L'obsession de la mort et de la vie conduit alors à un constant éloignement de soi-même et empêche de s'ouvrir au réel.
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.
INTRODUCTION: Talking about death and dying is evoking discomfort in many persons, resulting in avoidance of this topic. However, end-of-life discussions can alleviate distress and uncertainties in both old and young adults, but only a minority uses this option in palliative care. Even in healthy populations, talking about death is often seen as alleviative and worthwhile, but rarely initiated.
OBJECTIVE: To investigate different psychological interventions (a) encouraging the readiness for end-of-life discussions and (b) changing death attitudes in healthy adults of different ages.
METHODS: 168 participants were randomized to four different interventions (IG1: value-based intervention with end-of-life perspective, IG2: motivation-based intervention with end-of-life perspective, IG3: combination of IG1 and IG2, CG: control group). Primary outcome was the readiness to engage in end-of-life topics. Secondary outcomes were fear of death, fear of dying and death acceptance. Assessments took place before, directly after the intervention and at 2 weeks of follow up.
RESULTS: IG2 and IG3 reported significantly more changes in the readiness to engage in end-of-life discussions than the CG (F[5.61, 307] = 4.83, p < 0.001, ηp2 = 0.081) directly after the intervention. The effect of IG3 remained stable at the follow-up. There were no significant effects of the interventions on end-of-life fears or death acceptance. Acceptability of the interventions was very high.
CONCLUSIONS: Short interventions can be useful to encourage end-of-life discussions and could be integrated in health care programs. The efficacy and effectiveness of these short interventions in palliative patients are currently examined.
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.
Background: The COVID-19 pandemic has created an environment in which existence is more fragile and existential fears or terror rises in people.
Objective: Managing existential terror calls for being mature about mortality, something with which palliative care providers are familiar and in need of greater understanding.
Methods: Using a case to illustrate, we describe existential terror, terror management, and existential maturity and go on to outline how existential maturity is important for not only the dying and the grieving but for also those facing risk of acquiring COVID-19.
Results: Next, we describe how essential components in attaining existential maturity come together. (1) Because people experience absent attachment to important people as very similar to dying, attending to those experiences of relationship is essential. (2) That entails an internal working through of important relationships, knowing their incompleteness, until able to “hold them inside,” and invest in these and other connections. (3) And what allows that is making a meaningful connection with someone around the experience of absence or death. (4) We also describe the crucial nature of a holding environment in which all of these can wobble into place.
Discussion: Finally, we consider how fostering existential maturity would help populations face up to the diverse challenges that the pandemic brings up for people everywhere.
Background: Our objectives were to test whether during a potentially life-threatening medical emergency, perceived threat (a patient’s sense of life endangerment) in the emergency department (ED) is common and associated with the subsequent development of posttraumatic stress disorder (PTSD) symptoms.
Methods: This study was an ED-based prospective cohort study in an academic hospital. We included adult patients requiring acute intervention in the ED for resuscitation of a potentially life-threatening medical emergency, defined as respiratory or cardiovascular instability. We measured patient-perceived threat in the ED using a validated patient self-assessment measure (score range = 0 to 21, with higher scores indicating greater perceived threat). We performed blinded assessment of PTSD symptoms 30 days after discharge using the PTSD Checklist for Diagnostic and Statistical Manual of Mental Disorders-Fifth Edition (PCL-5).
Results: Ninety-nine of 113 (88%) patients completed follow-up, with 98% reporting some degree of perceived threat, median (interquartile range [IQR]) perceived threat score 12 (6 to 17), and 72% reported PTSD symptoms in relation to their ED visit (median [IQR] PC-5 score = 7 [0 to 30]). Patients with respiratory instability had higher median (IQR) perceived threat scores (16 [9 to 18] vs. 9 [6 to 14)] and PCL-5 scores (10 [2 to 40] vs. 3 [0 to 17]) compared to patients without respiratory instability. In a multivariable linear regression model adjusting for potential confounders, greater perceived threat in the ED was independently associated with higher PCL-5 scores (ß = 0.79, 95% confidence interval [CI] = 0.15 to 1.42). Among the individual perceived threat items, the feeling of helplessness during resuscitation had the strongest association with PCL-5 score (ß = 5.24, 95% CI = 2.29 to 8.18).
Conclusions: Perceived threat during potentially life-threatening emergencies is common and independently associated with development of PTSD symptoms. Additional research to test whether reduction of perceived threat in the ED attenuates the development of PTSD symptoms following potentially life-threatening emergencies is warranted.
PURPOSE: Approaching death seems to be associated with physiological/spiritual changes. Trajectories including the physical-psychological-social-spiritual dimension have indicated a terminal drop. Existential suffering or deathbed visions describe complex phenomena. However, interrelationships between different constituent factors (e.g., fear and pain, spiritual experiences and altered consciousness) are largely unknown. We lack deeper understanding of patients' inner processes to which care should respond. In this study, we hypothesized that fear/pain/denial would happen simultaneously and be associated with a transformation of perception from ego-based (pre-transition) to ego-distant perception/consciousness (post-transition) and that spiritual (transcendental) experiences would primarily occur in periods of calmness and post-transition. Parameters for observing transformation of perception (pre-transition, transition itself, and post-transition) were patients' altered awareness of time/space/body and patients' altered social connectedness.
METHOD: Two interdisciplinary teams observed 80 dying patients with cancer in palliative units at 2 Swiss cantonal hospitals. We applied participant observation based on semistructured observation protocols, supplemented by the list of analgesic and psychotropic medication. Descriptive statistical analysis and Interpretative Phenomenological Analysis (IPA) were combined. International interdisciplinary experts supported the analysis.
RESULTS: Most patients showed at least fear and pain once. Many seemed to have spiritual experiences and to undergo a transformation of perception only partly depending on medication. Line graphs representatively illustrate associations between fear/pain/denial/spiritual experiences and a transformation of perception. No trajectory displayed uninterrupted distress. Many patients seemed to die in peace. Previous near-death or spiritual/mystical experiences may facilitate the dying process.
CONCLUSION: Approaching death seems not only characterized by periods of distress but even more by states beyond fear/pain/denial.
Opiophobia is one of the principal causes of opioids' under-prescription in palliative care. From periods of abuse to times where their use was banned - which is still the case in some countries - the history of opioids is complex and it partially explains opiophobia. One of the main concern about the use of opioids is the risk of -dependence. Furthermore, scientific literature is not clear on this subject, in particular due to the fact that the scientific community has not yet come to an agreement on the terminology. This article shows, on the basis of specific studies, the predominance of opiophobia among the population and it outlines an historic overview of the use of opioids. In the last section, it focuses on the concept of dependence and the difficulty of measuring it in chronic opioid therapies.
PURPOSE: The purpose of our study was to clarify any difficulties or problems that exist in Japanese healthcare sites regarding the selection of death anxiety as a nursing diagnosis.
METHODS: This study was a qualitative, inductive research design. The semistructured interviews were conducted on the participants who were nurses and had 3 or more years of clinical experience in Japan.
RESULTS: Results showed four categories: "The Japanese have a culture of avoiding death," "It is extremely difficult to match diagnostic indicators and related factors with specific patient cases," "Other diagnoses exist that are effective and enable proactive intervention," and "The definition of death anxiety and the meaning of its diagnostic indicators are unintelligible."
DISCUSSION: It is thought that nursing diagnoses that reflect specific cultural backgrounds require definitions appropriate to each country and appropriate revisions to diagnostic indicators.
This study describes the psychological effects of death education in reducing the fear of death in a large cohort of Italian adolescents. Following the constructs of “distal defenses” and “mortality salience” of Terror Management Theory, this research intervention also evaluated the proposition that spirituality and belief in an afterlife could provide an effective buffer against fear of death. Five hundred thirty-four Italian high school students participated in a school-based death education program with an experimental group and a nonrandomized control condition. Using a pre/post-course design, we assessed fear of death, alexithymia, and representations of death and spirituality for both groups. Results confirmed that the course reduced death fears and the representation of death as annihilation while also enhancing spirituality. In particular, the older participants in the death education course increased their spirituality and decreased their fear of death, whereas females reduced their conviction that death was an absolute annihilation. Finally, the structural model suggested that alexithymia mediates the relationships among fear of death and spirituality; in particular, fear of death predicted more alexithymia and more alexithymia predicted lower spirituality.
As lesbian, gay, bisexual, transgender, and queer (LGBTQ+) communities age, many individuals expect a need to enter the long-term care system toward the end of life. Not unlike most aging Canadians, this anticipation is met with concern and fear. However, previous research suggests that older LGBTQ + individuals have unique fears often related to personal safety and discrimination. This qualitative study examined the hopes and fears of older LGBTQ + adults considering long-term care as they face end of life. Data were collected from three focus groups in Ontario, Canada, and analyzed using inductive thematic analysis. Specific and frequent reference to fear of entering long-term care homes was common across all focus groups, as participants anticipated: social isolation, decreased independence and capacity for decision-making, increased vulnerability to LGBTQ+-related stigma as well as exposure to unsafe social and physical environments. The results from this study, therefore, emphasize the need for palliative care specialists and long-term care home staff to address the unique health needs of older LGBTQ + adults nearing the end of life in order to work toward allaying fears and creating supportive and inclusive long-term care environments.
Le clinicien propose de cerner par l'exemple la signification de la maladie dans la société contemporaine et mesure la valeur que chacun lui accorde dans son quotidien. La réflexion s'intéresse autant à la perception du domaine médical dans ses composantes humaines et thérapeutiques qu'à la condition physique et morale du patient, de l'annonce de la pathologie jusqu'à la mort.
Il était une fois deux psychanalystes qui voulaient parler de la mort autrement. Ils sont partis à la rencontre de ceux qui la côtoient tous les jours, qui l'ont rencontrée au détour d'un événement traumatique, qui ont traversé des deuils, qui ont survécu à une maladie ou à un accident. La mort se vit de manière toujours singulière. Elle mène au cimetière comme à la création, à la souffrance invivable comme à la renaissance.
Et il y a ceux qui ont approché la mort jusqu'à peut-être entrevoir ce qui se situe après... Joseph Agostini et Agnès Rouby leur ont donné la parole. Pour en finir avec la mort, c'est aussi et surtout un livre sur la vie... toujours recommencée.
La famille, les soignants s’inquiètent à l’approche de la mort de l’enfant, de ce qu’il sait, pense et ressent. Ils se demandent si l’enfant a conscience
qu’il va mourir, s’il en a parlé à quelqu’un, s’il faut prendre l’initiative de lui en parler et comment ? L’expérience montre que les enfants en fin de vie acquièrent une conscience de leur mort à venir à travers la dégradation de leur corps. Ils parlent de leur mort en exprimant leurs peurs et désirs, pour être écoutés ou poser des questions. L’entourage de l’enfant, aussi bien familial que soignant, éprouve aussi des peurs, illusions et désirs qu’il projette à bon ou mauvais escient sur l’enfant malade. La notion d’information à l’enfant sur sa mort prochaine est discutée à partir de ce que l’enfant en perçoit et de sa façon de réagir. Écouter ce que l’enfant dit ou ne dit pas nous éclaire sur ce qu’il sait, veut ou ne veut pas savoir. Il est important de garder à l’esprit que le doute et le clivage sont des
mécanismes de défense qui protègent efficacement le patient de ses angoisses, en particulier de mort. Par ailleurs, les difficultés des soignants au moment de la fin de vie sont discutées par rapport à la notion de « mort idéale » et de toute-puissance.
OBJECTIVE: This study investigated the relationship between death anxiety (DA) and fear towards patients according to the age and illness of the patient.
METHODS: A sample of 94 undergraduate nursing students from an Australian university were presented with a hypothetical patient, who varied by age (29 years or 71 years) and illness (arthritis, cancer or dementia). They then completed measures of DA and fear towards the patient.
RESULTS: Older patients with dementia were associated with higher DA compared to all other conditions. Greater fear was associated with patients in the dementia target condition.
CONCLUSION: The findings from this study are consistent with terror management theory; specifically, older age and terminal illness are associated with greater DA. Implications are discussed regarding the quality of care provided to older people with dementia.
BACKGROUND: Due to the aging population of China, the need for palliative care will increase. However, one of the barriers to utilization of palliative care is the traditional belief that talking about death and dying is taboo.
OBJECTIVE: The aim of this study was to examine to what extent older Chinese patients were willing to answer questions about death and dying by asking them about "fear of death" and their desire to "use advanced life support when dying."
DESIGN: Survey questionnaire.
SETTING/SUBJECTS: Convenience sample (N = 993 hospitalized patients).
RESULTS: Only 215 (21.7%; 95% confidence interval [CI] 16.2%-27.1%) and 99 (9.9%; 95% CI 4.1%-15.8%) patients did not answer the questions related to "fear of death" and "use of advanced life support when dying," respectively, while 439 (44.2%; 95% CI 38.7%-49.7%) answered "yes" and 339 (34.1%; 95% CI 28.7%-39.6%) answered "no" for "fear of death" and 382 (38.5%; 95% CI 32.6%-44.3%) answered "yes" and 512 (51.6%; 95% CI 45.7%-57.4%) answered "no" for "use of advanced life support when dying." In multinomial logistic regression analysis, fear of death was associated with younger age, lowest level of function, and desire to use advanced life support.
CONCLUSIONS: The majority of older patients were willing to answer the two questions about death and dying. About one-third of patients were not afraid of death, and older patients were less likely to be afraid of death. More than 50% of patients answered that they would not choose advanced life support when dying. More research in this area is needed to help advance palliative care in China.