Supporting physicians in Intensive Care Units (ICU)s as they face dying patients at unprecedented levels due to the COVID-19 pandemic is critical. Amidst a dearth of such data and guided by evidence that nurses in ICUs experience personal, professional and existential issues in similar conditions, a systematic scoping review (SSR) is proposed to evaluate prevailing accounts of physicians facing dying patients in ICUs through the lens of Personhood. Such data would enhance understanding and guide the provision of better support for ICU physicians.
OBJECTIVE: Meaning-making may assist individuals in adaptation to stressful life events, particularly bereavement. However, few studies have examined meaning-making among pediatric populations with advanced illness to understand how this process unfolds before the child's death. This study explores meaning-making pre-bereavement among children with advanced cancer and their parents.
METHODS: As part of a larger study examining shared decision-making near the end-of-life, 24 children with advanced cancer and/or high-risk cancer, 26 mothers, and 11 fathers participated in individual, semi-structured interviews. Analyses focused on questions regarding meaning-making. Four coders analyzed the data via directed content analysis.
RESULTS: Three major meaning-making themes emerged: (1) sense-making (i.e., unknown, no sense/meaning, religious/spiritual explanations, scientific explanations), (2) benefit-finding, and (3) purpose/legacy. Some stated they were unable to make sense of the diagnosis, because there was no reason, they were not there yet, or they were dealing with the situation and moving forward. Others reported finding meaning through spiritual and scientific explanations. Many identified benefits related to the child's illness, such as personal growth and stronger relationships. Some parents expressed their purpose in life was to live for their children, while others shared their child's legacy as a way to find meaning.
CONCLUSIONS: Our findings highlight the struggle children and parents often face when attempting to make sense of the child's advanced or high-risk illness. Clinicians might consider if meaning-centered interventions designed for use in adults at end-of-life and bereaved parents may be helpful for children with advanced or high-risk cancer and their parents.
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.
Contexte : La recherche sur laquelle s’appuie cet article a été réalisée au cours d’un contrat doctoral en psychologie clinique. La question déployée autour des intentions et processus psychiques dans les prises de décisions à la place d’autrui dans les situations de fin de vie, a permis la mise en place d’une recherche de terrain par le biais d’observations et d’entretiens auprès de professionnels de soins palliatifs. Parmi les trois « triangulations cliniques » examinées dans la thèse, nous choisissons de nous arrêter sur une configuration particulière qui nous permet de mettre en exergue les affects négatifs qui prennent parfois place dans la relation de soin et la manière dont ceux-ci habitent les décisions que nous prenons à la place de nos patients.
Objectifs : Dans cette présentation, nous tentons de mettre en lumière certains mouvements inconscients qui nous semblent inhérents à la relation d’aide à la personne vulnérable, mais exacerbés lors de la rencontre avec des patients "déviants" (non compliants, dans le refus, etc.). Nous verrons comment cette négativité, prise dans des alliances inconscientes (R. Kaës, 2009), peut générer des situations qui relèvent parfois d’une véritable violence du soin (Ciccone et al., 2014) qu’il semble essentiel de mieux identifier afin de garantir une véritable éthique des processus décisionnels qui imprègnent les pratiques soignantes.
Méthode : Le recueil de données s’appuie sur des entretiens de recherche et des temps d’observation réalisés au sein de deux unités de soins palliatifs (USP) situées en France, organisés en deux sessions de 13 journées et/ou nuitées. Les entretiens ont été réalisés sous la forme d’une discussion guidée avec plusieurs professionnels (médecins, infirmières, aides-soignantes ou psychologues) volontaires. Les "triangulations cliniques" sont l’aboutissement d’un travail de recomposition au sujet d’un patient accueilli dans l’USP (1er point) à partir des notes d’observations de la chercheuse (2e point) et du discours des professionnels (3e point). Dans cet article, c’est le récit de M. Aïe qui est présenté parmi les trois triangulations cliniques soutenant le travail de thèse, dans ce qu’il offre la possibilité d’une mise en perspective de plusieurs niveaux de complexité autour de la négativité et des décisions prises à la place d’autrui.
Résultats : Cette présentation offre une occasion de penser le soin ainsi que la décision prise à la place d’autrui dans des dynamiques nouvelles. Les résultats cliniques obtenus à partir de la méthode de recherche originale mise en place dans la thèse montrent toute la fécondité d’un travail qui repose sur l’analyse des situations complexes à partir d’une triangulation clinique, cette triangulation permettant d’étudier les enjeux subjectifs susceptibles de s’exprimer à différents niveaux. C’est par ailleurs la perspective groupale qui est ici mise en relief, notamment au travers les alliances inconscientes basées sur le négatif de certaines situations de soin. Le récit de M. Aïe nous permet d’illustrer comment la haine se diffuse inconsciemment au sein des décisions prises pour la personne vulnérable. Ces conséquences nous appellent à déployer des stratégies pour tenter de symboliser ces affects déliants.
Conclusion : Décider à la place de l’autre vulnérable n’est une mince affaire pour personne et convoque chaque "décideur" dans ce qu’il a éprouvé à être le sujet vulnérable d’une décision prise par autrui : la figure du nourrisson en étant l’originaire (Ciccone, Bonnefoy, Bonneville, Calamote, & Deronzier, 2012). Face aux situations extrêmes de la vie où se jouent la précarité ontologique du sujet, depuis le début jusqu’à la toute fin de la vie, peut-être faut-il se saisir de positions subversives (Pacific, 2011) pour travailler l’idée qu’envisager la maltraitance comme potentiel du soin peut être un préalable à la bientraitance.
Certes, pour un être enfermé dans la très grande souffrance, voir le plus souvent le siège de "l'ami" vide peut être très cruel et engendrer une immense tristesse, en forme de bilan amer d'une vie déséquilibrée. Mais en humanité, point de comptabilité, un premier soin tendre sur un corps rejeté, un regard "d'égal à égal" ont une valeur de miracle.
This article considers a particular aspect of palliative psychology that is inherent to the needs in the area of attitudes concerning Advance Healthcare Directives (AHDs) among Italian physicians and nurses after the promulgation of Law No. 219/2017 on AHDs and informed consent in 2018. The study utilized a mixed-method approach. The group of participants was composed of 102 healthcare professionals (63 females and 39 males). The quantitative part utilized the following scales: Attitudes toward Euthanasia, the Religious Orientation Scale, the Balanced Inventory of Desirable Responding, and the Testoni Death Representation Scale. The results were mostly in line with the current literature, especially concerning a positive correlation between religiosity and the participants' rejection of the idea of euthanasia. However, the qualitative results showed both positive and negative attitudes towards AHDs, with four main thematic areas: "Positive aspects of the new law and of AHDs", "Negative aspects of the new law and of AHDs", "Changes that occurred in the professional context and critical incidents", and "Attitudes towards euthanasia requests." It emerged that there is not any polarization between Catholics or religious people and secularists: Their positions are substantially similar with respect to all aspects, including with regard to euthanasia. The general result is that the law is not sufficiently understood, and so a quarter of the participants associate AHDs with euthanasia. Discussions on the opportunity for palliative psychologists to help health professionals to better manage these issues through death education courses are presented.
PURPOSE: Understanding the end-of-life psychosocial needs of cancer patients at home is a knowledge gap. This study describes the trajectory of psychosocial symptoms in the last 6 months of life among cancer decedents who were receiving home care.
METHODS: Observational population-based cohort study of cancer decedents who were receiving home care services between 2007 and 2014. Decedents had to have at least one home care assessment in the last 6 months of life for inclusion. Outcomes were the presence of psychosocial symptoms (i.e., anxiety, loneliness, depression, social decline, caregiver distress, and cognitive decline) at each week before death.
RESULTS: Our cohort included 27,295 unique cancer decedents (30,368 assessments), of which 58% died in hospital. Fifty-six percent were older than 74, and 47% were female. The prevalence of all symptoms increased approaching death, except loneliness. Social decline (48%-78%) was the most prevalent psychosocial symptom, though loneliness was reported in less than 10% of the cohort. Caregiver distress rose over time from 15%-27%. A third of the cohort reported issues with cognitive impairment. Multivariate regression showed that physical symptoms such as uncontrolled pain, impairment in independent activities of daily living, and a high level of health instability all significantly worsened the odds of having a psychosocial symptom in the last 3 months of life.
CONCLUSION: In this large home care cancer cohort, trajectories of psychosocial symptoms worsened close to death. Physical symptoms, such as uncontrolled pain, were associated with having worse psychosocial symptoms at end of life.
Agitation is a common, treatable symptom that profoundly impacts quality of life and exacerbates caregiver fatigue in the hospice setting for patients with dementia. The objective of this study was to analyze the efficacy of tailored nonpharmacological interventions for mitigation of unwanted behaviors in the population of patients with behavioral and psychological symptoms in dementia while receiving hospice care. The 4-domain Pittsburgh Agitation Scale (PAS; Motor, Verbal, Aggressive, Resistance to Care) was used for multiple baseline and posttest measurements of agitation. Effectiveness of nonpharmacological interventions was evaluated using analysis of variance for repeated measures for the total PAS score. Motor agitation was the presenting problem with highest-rated severity compared with Verbal, Aggression, and Resistance to Care domains. Analysis of variance demonstrated no difference between baseline referral and pretest total PAS measures (P = .8), but a significant drop in total PAS agitation after intervention (P < .001). The best outcomes, however, were with patients receiving both nonpharmacological and standard pharmacological interventions as opposed to nonpharmacological interventions alone (P = .034). For patients with dementia presenting with behavioral and psychological symptoms, selected nonpharmacological interventions provide significant mitigation of agitation.
In this case report, an elderly patient with COVID-19 pneumonia and a protracted intensive care course, who was unable to wean from mechanical ventilation, was transferred to the hospice unit for ventilator withdrawal and end of life care. Although symptom management was anticipated to focus on treating acute dyspnea, conditions mandated a shift to addressing the psychological challenges associated with prolonged critical illness. The interventions typical to hospice care—patient centered, family focused, and culturally sensitive—served to alleviate psychological symptoms of demoralization and despair, contributing to an outcome that pointed beyond pulmonary pathophysiology. Thought to be facing imminent death once the ventilator was removed, this patient defied the science behind weaning protocols, which can only be explained by a “will to live,” through loving engagement with his family, his favorite music, and a dedicated multidisciplinary hospice team.
CONTEXT: Hospice deaths in the U.S. are increasing. Dying hospice patients may have rapidly emerging needs the hospice team cannot immediately meet, exposing family caregivers to fright-inducing (i.e., scary) situations.
OBJECTIVE: Examine relationships between hospice care and family caregiver exposures and psychological responses to witnessing common, distressing patient symptoms near the end of life.
METHODS: Secondary analysis of prospective, cohort study of 169 patients with advanced cancer and their family caregivers were analyzed. Multivariable regression analyses modeled associations between hospice use and caregiver exposures and psychological responses (fear and helplessness) to witnessing distressing symptoms common near death, adjusting for potential confounding influences (e.g. home death, patient characteristics, and suffering). Caregiver self-reported exposures and responses to observing patient symptoms during the last month of life were assessed using the validated Stressful Caregiving Response to Experiences of Dying (SCARED) scale.
RESULTS: Hospice care was significantly, positively associated with more exposures and negative psychological responses to distressing patient symptoms, adjusting for home death, patient characteristics and physical and mental suffering. On average, hospice patients' caregivers scored 1.6 points higher on the SCARED exposure scale and 6.2 points higher on the SCARED psychological response scale than caregivers of patients without hospice (exposure: 10.53 versus 8.96; psychological responses: 29.85 versus 23.67). Patient pain/discomfort, delirium, and difficulty swallowing/choking were reported by three-fourths of caregivers and were associated with the most fear and helplessness among caregivers.
CONCLUSION: Hospice care is associated with more exposures to and caregiver fear and helplessness in response to "scary" patient experiences. Research is needed to understand how better to support family caregivers of hospice patients to enable them to cope with common, distressing symptoms of dying cancer patients. Hospice clinicians providing additional education and training about these symptoms might enable caregivers to better care for dying loved ones and reduce the stresses of end-of-life caregiving.
The Core Bereavement Items (CBI) is a commonly used measure that assesses core grief and bereavement experiences. Although previous psychometric testing has been conducted, no studies have assessed its use specifically aimed at adults aged 50 and older or for those who lost a loved one who was hospice care. This is critical, as losses and additional obstacles in bereavement compound throughout the aging process. The present study investigated reliability, content validity, and internal structure of the CBI in bereaved adults aged 50 and older whose loved one died while in hospice care (N = 205). Associations based on age, marital status, and relationship with the died patients were consistent with preexisting research. Results of a Cronbach a reliability test found that the CBI has excellent reliability in this population. Further, content validity was established based on the judgment of subject matter experts. Exploratory factor analysis supported a 1-factor structure, with all items loading as General Grief Experiences. Based on this analysis, the CBI is a valid and reliable tool when used with adults aged 50 and older.
Les rites funéraires ne forment pas qu'un espace virtuel groupal où il serait possible d'exprimer ses émotions. Par le biais d'opérations psychiques précises, ils préparent le sujet en deuil et son groupe à la mentalisation de la perte et à l'intégration des traces psychiques de la personne perdue. Si certains rituels sont traumatisants, c'est qu'ils favorisent l'expression d'une souffrance insupportable ou, au contraire, l'absence d'expression de la souffrance, contradictoire avec la réalité des liens établis entre le défunt et ses proches.
Background: Palliative care (PC) teams increasingly care for patients with cancer into survivorship. Cancer survivorship transcends distinctions between acute, chronic, malignant, and nonmalignant pain. Partnering with oncologists, PC teams manage pain that persists after disease-directed treatment, evaluate changing symptoms as possible signs of cancer recurrence, taper opioids and mitigate risk of opioid misuse, and manage comorbid opioid use disorder (OUD). While interdisciplinary guidelines exist for pain management in survivorship, there is a need to develop a conceptual model that fully translates the biopsychosocial framework of PC into survivorship pain management.
Objective: This review frames a model for pain management in cancer survivorship that balances analgesia with the imperative to minimize risk of OUD, recognizes signs of disease recurrence, and provides whole-person care.
Methods: Comprehensive narrative review of the literature.
Results: Little guidance exists for co-management of pain, psychological distress, and opioid misuse in survivorship. We identified themes for whole-person pain management in survivorship: use of opioids and co-analgesic medications to prevent recurrent pain from residual tissue damage following cancer treatment, opioid tapering to the lowest effective dose, utilization of nonpharmacologic psychological interventions shown to reduce pain, screening for and management of OUD in partnership with addiction medicine specialists, maintaining vigilance for disease recurrence, and engaging in shared medical decision making.
Conclusions: The management of pain in cancer survivorship is complex and requires interdisciplinary care that balances analgesia with the imperative to reduce long-term inappropriate opioid use and manage OUD, while maintaining therapeutic presence with patients in the spirit of PC.
Context: The WHO recognizes the need to attend to patients' spiritual needs as being fundamental to comprehensive and high-quality end-of-life care. Spiritual needs must be attended to since the resolution of biological and psychosocial issues is insufficient to reduce patients' suffering. Associations have been found between spiritual needs and other variables of importance for patients in palliative care. Despite the consensus that exists regarding the importance of assessing and attending to spiritual needs, professionals encounter many difficulties in attempting to do so.
Objectives: Our study aims to demonstrate the benefits that the Kibo therapeutic interview in palliative care patients can have for spirituality, demoralization, and resilience.
Methods: A parallel randomized controlled trial of two groups was undertaken. Information on 60 palliative care patients during pre- and post-intervention time points was gathered.
Results: ANOVAs showed a statistically significant effect of the intervention on the dimension of transpersonal spirituality. The ANCOVA for the effect of the intervention on resilience also pointed to its effectiveness. When the means of demoralization were examined, a higher decrease in the levels of demoralization for patients in the intervention group was observed, when compared to patients in the control group.
Conclusion: Our findings point to this interview as an effective means to attend to the spiritual needs of palliative patients, reducing demoralization and increasing resilience. Future research could focus on a broader sample and on the effects of this interview on family caregivers, mourners, and health care professionals.
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.
Most long-term care (LTC) residents are of age >65 years and have multiple chronic health conditions affecting their cognitive and physical functioning. Although some individuals in nursing homes return home after receiving therapy services, most will remain in a LTC facility until their deaths. This article seeks to provide guidance on how to assess and effectively select treatment for delirium, behavioral and psychological symptoms for patients with dementia, and address other common challenges such as advanced care planning, decision-making capacity, and artificial hydration at the end of life. To do so, we draw upon a team of physicians with training in various backgrounds such as geriatrics, palliative medicine, neurology, and psychiatry to shed light on those important topics in the following "Top 10" tips.
Little is known about health professionals first experiences of End-of-Life care in hospital. This study aims to understand the psycho-social process that occurs when hospital-based health professionals engage in caring for a dying patient for the first time. We conducted a Grounded Theory study, with 19 health professionals. Challenging professional boundaries is the core category which explains the overall process. The theoretical model we conceptualized evidenced three phases: 1) building a relationship between patient/family and professionals, 2) the disrupting impact and 3) the reaction phase. Our analysis highlighted the initial strong impact of this experience, which brought professionals to perceive emotional suffering and feelings of inadequacy. The new aspect our grounded theory revealed is that all the categories are pertinent to all the professionals involved, therefore they explain important aspects of interprofessional collaboration in End-of-Life care.
BACKGROUND: A sense of place (SOP) is defined as the emotional bonds, values, meaning, and symbols attached to a place.
AIMS: To assess SOP of patients with cancer during end-of-life care at home (home-hospice service) versus at a hospital in relation to place of care, social support, and emotional distress.
METHODS: Participants were 150, stage IV, cancer patients with a life expectancy of less than 6 months, as defined by oncological staff, who were not receiving any life-prolonging care. Seventy-five patients received care at home (home-hospice), and the other 75 received care at the oncology department at the hospital, by palliative unit staff. Participants completed the Brief Symptom Inventory anxiety and depression subscales, questionnaires on perceived support and both questionnaires on home SOP and hospital SOP.
RESULTS: Mean scores of emotional distress were similar for patients in home-hospice and at the hospital. Home SOP among individuals receiving care at home was high, and hospital SOP was high among hospitalized individuals. The structural equation model had good fit indexes, showing that each of the SOP variables mediated the association between place of care and emotional distress. Perceived support was associated with lower distress only in the hospital setting.
CONCLUSIONS: The SOP concept is relevant to understanding emotional distress in relation to place of care at end of life. Strengthening SOP in relation to place of care should be considered. As newly introduced concept regarding place of care at the end of life, SOP warrants further research.
The terminal stage of disease in teenagers is extremely complex to manage. In this study, we share some stories of terminally ill adolescent patients who made use of illusion as a way to overcome their anguish in their final stages of illness. These experiences show how young patients can cope better with terminal illness by resorting to a nonrational and fictional dimension that can serve them as a psychological compromise, helping them tolerate their real everyday life by suspending their critical senses for a while. Illusions can serve as a resource for young patients and a potentially useful tool for medical professionals.
OBJECTIVE: The diagnosis of an advanced cancer in young adulthood can bring one's life to an abrupt halt, calling attention to the present moment and creating anguish about an uncertain future. There is seldom time or physical stamina to focus on forward-thinking, social roles, relationships, or dreams. As a result, young adults (YAs) with advanced cancer frequently encounter existential distress, despair, and question the purpose of their life. We sought to investigate the meaning and function of hope throughout YAs' disease trajectory; to discern the psychosocial processes YAs employ to engage hope; and to develop a substantive theory of hope of YAs diagnosed with advanced cancer.
METHOD: Thirteen YAs (ages 23-38) diagnosed with a stage III or IV cancer were recruited throughout the eastern and southeastern United States. Participants completed one semi-structured interview in-person, by phone, or Skype, that incorporated an original timeline instrument assessing fluctuations in hope and an online socio-demographic survey. Glaser's grounded theory methodology informed constant comparative methods of data collection, analysis, and interpretation.
RESULTS: Findings from this study informed the development of the novel contingent hope theoretical framework, which describes the pattern of psychosocial behaviors YAs with advanced cancer employ to reconcile identities and strive for a life of meaning. The ability to cultivate the necessary agency and pathways to reconcile identities became contingent on the YAs' participation in each of the psychosocial processes of the contingent hope theoretical framework: navigating uncertainty, feeling broken, disorienting grief, finding bearings, and identity reconciliation.
SIGNIFICANCE OF RESULTS: Study findings portray the influential role of hope in motivating YAs with advanced cancer through disorienting grief toward an integrated sense of self that marries cherished aspects of multiple identities. The contingent hope theoretical framework details psychosocial behaviors to inform assessments and interventions fostering hope and identity reconciliation.