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.
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.
La mort qui frappe indistinctement les humains, quel que soit leur âge ou leur condition, est souvent vécue comme une injustice voire une escroquerie. Cet ouvrage, à travers différentes références (Antigone, la déportation, les enfants morts-nés…) et à travers trois récits d’analyse, essaiera de montrer comment un sujet peut tempèrer, alléger l’accablement d’un deuil.
Les soins palliatifs demandent de plus en plus de compétences médicales, soignantes, humaines et éthiques, afin d’asseoir leur légitimité dans des domaines de plus en plus pointus de la médecine – réanimation, néonatalogie, cancérologie, gériatrie – ainsi que dans la diversité des prises en charge, y compris au domicile ou en EPHAD.
Dans ce contexte de développement des formations et d’élargissement des champs de compétences de la pratique palliative, cette 5e édition du manuel offre :
-les indispensables connaissances thérapeutiques ;
-les outils, à destination des professionnels en vue d’acquérir une compétence clinique pour la rencontre et l’accompagnement humain, psychique et relationnelle de la personne malade ;
-une contextualisation de la pratique des soins palliatifs dans leur dimension sociale, sanitaire et politique ;
-des jalons pédagogiques pour le développement des soins palliatifs dans leur dimension pédagogique et de recherche.
Children are seeing rapid changes to their routines and facing an unpredictable future. Palliative care teams may consider expanding their communication training and skill sets to help families consider caring ways to communicate with their children and grandchildren about the coronavirus. Palliative care teams are wise to encourage families to ground their communication with children on key values: honesty and trust, self-compassion, safety, sensitivity, connection, preparedness, community building, recognition of death as a part of the life cycle, and legacy.
Conflict is an important consideration in the intensive care unit (ICU). In this setting, conflict most commonly occurs over the 'best interests' of the incapacitated adult patient; for instance, when families seek aggressive life-sustaining treatments, which are thought by the medical team to be potentially inappropriate. Indeed, indecision on futility of treatment and the initiation of end-of-life discussions are recognised to be among the greatest challenges of working in the ICU, leading to emotional and psychological 'burnout' in ICU teams. When these disagreements occur, they may be within the clinical team or among those close to the patient, or between the clinical team and those close to the patient. It is, therefore, crucial to have a theoretical understanding of decision-making itself, as unpicking misalignments in the family's and clinical team's decision-making processes may offer strategies to resolve conflict. Here, we relate Kahneman and Tversky's work on cognitive biases and behavioural economics to the ICU environment, arguing that these biases could partly explain disparities in the decision-making processes for the two conflicting parties. We suggest that through the establishment of common ground, challenging of cognitive biases and formulation of mutually agreeable solutions, mediation may offer a pragmatic and cost-effective solution to conflict resolution. The litigation process is intrinsically adversarial and strains the doctor-patient-relative relationship. Thus an alternative external party should be considered, however mediation is not frequently used and more research is needed into its effectiveness in resolving conflicts in the ICU.
BACKGROUND AND OBJECTIVES: Meaning in life (MIL) represent a key topic in palliative care. The aims of this study were to explore (1) the differences in perceived MIL and in the meaning-relevant life areas between a representative sample of the Swiss population and palliative care patients, and (2) to what extent MIL can be considered as a significant predictor of quality of life (QOL).
METHODS: A cross-sectional study was conducted separately for the patients (face-to-face interviews) and the general population (telephone survey). MIL was measured with the Schedule for Meaning in Life Evaluation (SMILE) and QOL with a single-item visual analogue scale (0-10). Sociodemographic variables were controlled for in the analyses.
RESULTS: 206 patients and 1015 participants from the Swiss population completed the protocol. Results indicated high MIL scores in both populations even if the difference was significant (patients 81.9 vs general population 87, p<0.001). Patients were more likely to cite 'family' (OR=1.78), 'social relations' (OR=1.9), 'spirituality and religion' (OR=3.93), 'social commitment' (OR=1.94) and 'growth' (OR=2.07), and less likely to cite 'finances' (OR=0.15) and 'health' (OR=0.21) as MIL-relevant areas. The SMILE scores and MIL areas explained 21.8% of the QOL variance for the patients and 15.1% for the representative sample.
CONCLUSIONS: Our data emphasise the importance of MIL as a contributor to QOL in both populations. It highlights the importance of the life areas contributing to MIL, especially social interactions for both populations, and spirituality and areas related to growth in palliative care patients.
Context: Clinicians often worry that patients' recognition of the terminal nature of their illness may impair psychological well-being.
Objectives: To determine if such recognition was associated with decrements to psychological well-being that persisted over time.
Methods: About 87 patients with advanced cancer, with an oncologist-expected life expectancy of less than six months, were assessed before and after an oncology visit to discuss cancer restaging scan results and again at follow-up (median time between assessments, approximately six weeks). Prognostic understanding (PU) was assessed at previsit and postvisit, and a change score was computed. Psychological well-being was assessed at pre, post, and follow-up, and two change scores were computed (post minus pre; follow-up minus post).
Results: Changes toward more accurate PU was associated with a corresponding initial decline in psychological well-being (r = -0.33; P < 0.01) but thereafter was associated with subsequent improvements (r = 0.40; P < 0.001). This pattern remained controlling for potential confounds. Patients showed different patterns of psychological well-being change (F = 3.07, P = 0.05; F = 6.54, P < 0.01): among patients with improved PU accuracy, well-being initially decreased but subsequently recovered; by contrast, among patients with stable PU accuracy, well-being remained relatively unchanged, and among patients with decrements in PU accuracy, well-being initially improved but subsequently declined.
Conclusion: Improved PU may be associated with initial decrements in psychological well-being, followed by patients rebounding to baseline levels. Concerns about lasting psychological harm may not need to be a deterrent to having prognostic discussions with patients.
Dans cette réflexion sur les soins palliatifs, nous pointons la parole médicale comme structurellement traumatique.
Fréquemment, elle bloque le sujet à l’Éternel présent et rend difficile la projection vers l’à-venir.
Nous avançons ici l’idée que l’accompagnement palliatif aide à se dégager de ce traumatisme. Nous distinguerons deux positions relationnelles différentes dans le rapport au patient, positions qui occasionnent des modalités distinctes de maniement de la parole...
Health care professionals’ (HCPs) experiences during early pediatric end-of-life care were explored using a theory-building case study approach. Multiple data collection methods including observation, electronic medical record review, and semi-structured interviews were collected with 15 interdisciplinary HCPs across four cases. Within- and across-case analyses resulted in an emerging theory. HCPs’ initial awareness of a child’s impending death is fluid, ongoing, and informed through both relational and internal dimensions. Initial cognitive awareness is followed by a deeper focus on the child through time-oriented attention to the past, present, and future. HCPs engage in a “delicate dance of figuring out” key issues. Awareness was exemplified through four themes: professional responsibility, staying connected, grounded uncertainty, and holding in. The emerging theoretical model provides a framework for HCPs to assess their ongoing awareness, identify personal assumptions, and inform gaps in understanding when facilitating early end-of-life care discussions with families.
Bibliotherapy is a therapeutic intervention that could potentially be utilized by pediatric palliative care social workers to aid in providing individualized support and adaptive coping techniques through end-of-life and bereavement. Multiple modalities of implementing bibliotherapy are considered, including applications in individual and group counseling. An institutionally supported bibliotherapy program that aims to provide therapeutic and recreational texts for patients, families and clinicians is described. Suggested guidelines and book titles for use in practice with bereaved siblings and families are provided alongside targeted description for use in clinical practice.
L'auteure, psychologue hospitalière, donne des conseils pour permettre à chacun de trouver sa place d'aidant auprès d'un malade. De l'entrée en soins palliatifs à la phase terminale, elle répond à l'ensemble des problématiques émotionnelles et relationnelles et propose des outils de dialogue pour faire le lien avec les professionnels de santé.
Alors que nous tous prenons de l'âge naturellement, parler du vieillissement relève quasiment du tabou. Si d'aventure, on en parle, c'est pour proposer des remèdes suggérant qu'un ensemble d'inconvénients, et pas des moindres, nous attendent. Rien d'étonnant alors que beaucoup de préjugés soient véhiculés sur ce sujet, préjugés auxquels ce livre propose de répondre d'un point de vue psychologique.
Effectivement, la psychologie du vieillissement, vue du côté de la santé – car une psychothérapie vise la santé psychique – est rarement abordée. L'auteur, fait part ici, aussi bien d'exemples émanant de son expérience clinique avec des patients âgés que de la formation des jeunes psychologues à l'Université. Ainsi, nombreux sont les sujets abordés en se plaçant tantôt du côté de la personne concernée, vieillissante ou déjà âgée, tantôt du côté du clinicien.
L'aspect sociétal quant à notre rapport au vieillissement et à la mort est également évoqué et une comparaison avec d'autres cultures est proposée. Le lecteur verra qu'on peut tout à fait parler de l'âge avec humour, car avant tout, la façon dont nous vieillissons nous révèle ce que nous sommes réellement. Nous écouter demande d'acquérir une certaine distance par rapport à nous mêmes et surtout exige de la bonne humeur, source de sérénité.
Ce livre se lit à tout âge, car il n'y a pas d'âge pour vieillir.
INTRODUCTION: Advance healthcare directives (AHDs) in mental health offer important information regarding service users' preferences. However, whether AHDs are truly understood by providers is questionable.
AIM: To survey the knowledge and attitudes of mental health professionals towards AHDs and examine any associations with socio-demographic and occupational variables.
METHOD: We cross-sectionally surveyed the knowledge and attitudes of 113 mental health professionals by using two validated questionnaires.
RESULTS: Participants showed very positive attitudes and high levels of knowledge about the conceptual definition and application of AHDs in clinical practice but their knowledge of the legalities, procedure and registration of AHDs was poor. Working in a community, having a career specializing in mental health, or having personally signed an AHD was associated with enhanced knowledge about them. Moreover, female sex or employment as an auxiliary nursing-care technician was associated with stronger positive attitudes.
DISCUSSION: Legal and structural changes will be needed to implement AHDs in Spain and to promote competence among healthcare providers in order to include AHDs in everyday practice.
IMPLICATIONS FOR PRACTICE: The Spanish mental healthcare system requires legal and structural changes and must improve healthcare providers' competence in AHDs before they are implemented.