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.
OBJECTIVE: Attachment security protects psychological well-being in patients with advanced cancer, but its effect on death preparation in this population has not been demonstrated. We examined the relationship of attachment security to death preparation in advanced cancer and tested whether couple communication mediates this relationship and whether gender and age moderate this mediating effect, using longitudinal data from a psychotherapy trial.
METHODS: Patients with advanced cancer who lived with a partner (Nbaseline = 289) completed measures of attachment security (attachment avoidance, attachment anxiety), couple communication, and death preparation (preparation for end of life, life completion) and attendant health involvement (relationship with healthcare provider). A moderated mediation model was evaluated at each time period (baseline, three months, and six months).
RESULTS: Couple communication mediated the relationship of attachment security to preparation for end of life and life completion (b's = -.06--.10). Anxiety x Gender effects on baseline couple communication (p's = .016) indicated that women with greater attachment anxiety reported worse communication than their male counterparts. Couple-communication x Gender x Age effects on baseline preparation for end of life (P = .007-.020) suggested that women showed better preparation with better couple communication. Younger patients reported less preparation than older patients, especially with poorer communication, but their preparation increased with better communication, especially in younger men.
CONCLUSIONS: Attachment security supports death preparation in advanced cancer partly through better couple communication. Couple-based psychotherapeutic interventions, especially for younger individuals and women with attachment anxiety, may facilitate constructive conversations and death preparation.
AIMS AND OBJECTIVES: To synthesise and map the literature on the psychological outcomes reported following debriefing of healthcare providers who experience expected and unexpected patient death in either clinical practice or simulation setting.
BACKGROUND: Patient death occurs in both the clinical and simulation environments and can result in psychological stress in healthcare providers and students. While debriefing following patient death has demonstrated the ability to promote positive psychological outcomes, addressing the psychological or emotional stress of the event is inconsistently addressed.
DESIGN: A scoping review was conducted using the Arksey and O'Malley framework.
METHOD: The Cochrane Library, MEDLINE, CINAHL, PsycINFO, JBI and Scopus databases were searched with English language constraints and no limit on publication date. The Scoping Reviews (PRISMA-ScR) Checklist was used (Annals of Internal Medicine, 2018, 169, 467) (see Appendix S1).
RESULTS: Eighteen articles (16 research papers and 2 review papers) met the inclusion criteria. Of the 16 research papers, 9 reported on debriefing models in the simulation environment and 7 in the clinical setting. The types of debriefing models found in the simulation setting tended to focus on healthcare providers' learning, while those in the clinical setting typically focused on healthcare providers' emotional reactions and resulted in positive psychological effects.
CONCLUSION: Debriefing has the potential to positively affect psychological outcomes of healthcare providers who experience patient death. The type of debriefing that is selected is a key component to achieving these positive outcomes.
RELEVANCE TO CLINICAL PRACTICE: This scoping review identified the debriefing frameworks used in both simulation and clinical environments following patient death events, and any associated psychological outcomes. There is a need for debriefing to occur after each death in either environment; however, there is a lack of evidence-based debriefing frameworks that can be used in both the clinical and simulation environments to promote positive psychological outcomes.
Le présent article recense les contributions théoriques et empiriques de la littérature en sciences sociales et en psychologie/psychanalyse sur le sujet du décès/deuil périnatal. Bien que le traitement ait été distinct dans chacune de ces deux littératures, on observe un intérêt convergent pour la question de la non-reconnaissance du décès/deuil périnatal, et son corollaire, les rituels. Cet article s’articule autour de ces deux objets afin de montrer comment ils ont été examinés dans chacune des deux littératures, avant de proposer, en guise de conclusion, des pistes pour poursuivre et complexifier la réflexion sur le sujet.
Purpose: The aim of the study was to examine the psychosocial problems and spiritual coping styles of the family caregivers related to patients receiving palliative care.
Design and Methods: The research sample consisted of 76 family caregivers related to palliative care patients. The data collection method used were questionnaire forms. The two forms used were Hospital Anxiety Depression Scale and Religious Coping Methods Scale.
Findings: The mean anxiety score of the participants was 10.86 ± 4.30, mean depression score was 9.38 ± 3.66, mean positive coping scale score was 25.31 ± 3.85, and mean negative coping scale score was 10.32 ± 3.38.
Practice Implications: Healthcare professionals involved in palliative care are encouraged to evaluate the spiritual experiences of family caregiver to support their wellbeing.
BACKGROUND: Opioid overdoses have reached epidemic levels in the United States and have clustered in Northeastern and "Rust Belt" states. Five Factor Model (FFM) personality traits also vary at the state level, with anger-prone traits clustered in the Northeast region. This study tested the hypothesis that state-level anger proneness would be associated with a greater increase in rates of opioid overdose death.
METHODS: This was a secondary analysis of state-level data on FFM traits, opioid overdose deaths, and other classes of preventable death. Robust mixed models tested whether change in rates of opioid overdose death from 2008 to 2016 was moderated by state-level anger proneness.
RESULTS: State-level anger proneness was significantly associated with greater increases in rates of opioid overdose deaths (B = 1.01, standard error = 0.19, P < .001, 95% confidence interval: 0.63-1.39). The slope of increase in opioid overdose death rates was 380% greater in anger-prone states and held after adjustment for potential confounders such as state-level prevalence of major depressive disorder, number of mental health facilities, and historical patterns of manufacturing decline. A similar pattern was observed between state-level anger proneness and benzodiazepine overdose deaths but was not significant for the latter after adjustment for potential confounders.
CONCLUSION: These findings suggest that states characterized as more anger prone have experienced greater increases in opioid overdose deaths.
CONTEXT: Psychological symptoms are common among palliative care patients with advanced illness, and their effect on quality of life can be as significant as physical illness. The demand to address these issues in palliative care is evident, yet barriers exist to adequately meet patients' psychological needs.
OBJECTIVES: This article provides an overview of mental health issues encountered in palliative care, highlights the ways psychologists and psychiatrists care for these issues, describes current approaches to mental health services in palliative care, and reviews barriers and facilitators to psychology and psychiatry services in palliative care, along with recommendations to overcome barriers.
RESULTS: Patients in palliative care can present with specific mental health concerns that may exceed palliative care teams' available resources. Palliative care teams in the USA typically do not include psychologists or psychiatrists, but in palliative care teams where psychologists and psychiatrists are core members of the treatment team, patient well-being is improved.
CONCLUSION: Psychologists and psychiatrists can help meet the complex mental health needs of palliative care patients, reduce demands on treatment teams to meet these needs and are interested in doing so; however, barriers to providing this care exist. The focus on integrated care teams, changing attitudes about mental health, and increasing interest and training opportunities for psychologists and psychiatrists to be involved in palliative care, may help facilitate the integration of psychology and psychiatry into palliative care teams.
Relationships of care for those facing illness are inherent to the practice of medicine. Palliative care provides interpersonal space to patients and families that helps them face serious illness and dying. We consider therapeutic holding uniquely critical in palliative care but see it as applying in varied forms throughout medicine. Its optimization requires a deep understanding of its nature. We use theoretical foundations of psychodynamic therapy, which uses the therapeutic relationship as its sole intervention, to identify the key elements of palliative care's therapeutic holding. We draw together six major concepts to do so. Using a fairly typical case, we illustrate how a palliative care team that included a psychodynamic therapist created therapeutic holding. This article came as part of a discussion group about psychodynamic cases involving serious illness and evolved in discussion with the rest of the authors. Northwestern's Institutional Review Board (IRB) exempted this project. This case is anonymized; sociodemographic and specific illustrations are changed. This case exemplifies how psychodynamic theory discerns and describes elements of palliative care's therapeutic holding. The case further illuminates the important place of therapeutic holding in effective palliative care and shows how psychodynamic therapy can help. We urge further research on therapeutic holding in palliative care.
Background: Alexithymia, or difficulty identifying and describing emotions and sensations, contributes to an increased risk of chronic pain, and low help-seeking.
Objective: To investigate whether family caregivers of advanced cancer patients visiting a palliative care department had alexithymia, and whether this was related to their pain intensity, personalized pain goals, and help-seeking for chronic musculoskeletal pain.
Design: A single-center cross-sectional survey.
Measurements: Pain intensity was evaluated using a numerical rating scale. Pain improvement was evaluated against personal goals. Alexithymia was assessed using the Toronto Alexithymia Scale-20 (TAS-20), and anxiety and depression using the Hospital Anxiety and Depression Scale.
Setting/Subjects: Of 320 family caregivers visiting the palliative care department, 152 (47.5%) had chronic musculoskeletal pain; all 152 were included in the study.
Results: Alexithymia was observed in 36.2% of participants. Participants with higher scores on the TAS-20 tended to have higher pain intensity scores and personal pain goal scores. TAS-20 score had the strongest correlation with personal pain goals, with a correlation coefficient of 0.555 (p < 0.001).
Conclusions: Pain intensity in family caregivers with alexithymia tended to be high. These participants set higher personal pain goals (lower goals for symptom improvement) than those without alexithymia. We found no difference in personal pain goal response between family caregivers with and without alexithymia. When we examine pain in family members with alexithymia who are caring for cancer patients, we need to recognize that they may set higher personal pain goals and seek less help.