Medicalizing meaning: demoralization syndrome and the desire to die

Objective: To critically analyse the proposed new psychiatric condition, demoralization syndrome, and the implications drawn by its proponents for the clinical-ethical status of requests by terminally ill patients for assistance to die. Method: The diagnostic features of demoralization syndrome, a proposed new psychiatric disorder, recognizable particularly in palliative care settings, are summarized. The consequences of proposed therapeutic interventions are described, one of which is relief of the desperation which motivates some demoralized patients to consider ending their lives and to seek assistance in dying. The connections between the proposed condition and the desire to die are analysed in the context of the continuing tensions surrounding the ontological status and sociopolitical implications of psychiatric categories and the pervasive medicalization of modern life. Results: The analysis suggests that by medicalizing existential cognitions at the end of life, the proposed diagnostic category also normalizes a particular moral view concerning assistance in dying. Conclusions: While further research into the issues described in this provisional syndrome may benefit some patients, the categorization of demoralization as a medical diagnosis is a questionable extension of psychiatry's influence, which could serve particular social, political and cultural views concerning the end of life.

Terminally ill cancer patients’ wish to hasten death

This exploratory study investigated factors associated with the wish to hasten death among a sample of terminally ill cancer patients. Semi-structured interviews conducted on a total of 72 hospice and home palliative care patients were subjected to qualitative analysis using QSRNUDIST. The main themes to emerge suggested that patients with a high wish to hasten death had greater concerns with physical symptoms and psychologica l suffering, perceived themselves to be more of a burden to others, and experienced higher levels of demoralization, while also reporting less confidence in symptom control, fewer social supports, less satisfaction with life experiences and fewer religious beliefs when compared with patients who had a moderate or no wish to hasten death. The implications of these findings will be discussed.

Psychological and social profile of family caregivers upon commencement of palliative care provision

Context
Palliative care services are required to support patients who have advanced, life-threatening, noncurable disease, and their family caregivers. Comprehensive psychological and social support for bereaved family members also is expected. However, recent systematic reviews have demonstrated significant gaps in evidence-based approaches for such support. Furthermore, a comprehensive understanding of the psychological and social response to the family caregiver role is required for support to be optimized.

Objectives
We sought to examine the psychological and social profile of family caregivers on commencement of receiving palliative care services.

Methods
A self-report questionnaire was administered to primary family caregivers of patients within two weeks of admission to three palliative care services in Melbourne, Australia. The questionnaire incorporated six instruments that measured 11 family caregiver-related psychosocial factors; four instruments that measured caregiver psychological distress factors; 14 mental health lifetime risk factors; and a sociodemographic questionnaire.

Results
Three hundred and two family caregivers participated. Nearly half (44%) of the caregivers had a probable anxiety and/or depressive disorder, with 40% scoring more than the cutoff score for probable anxiety and 20% scoring more than the cutoff score for probable depression. Additionally, approximately 15% of caregivers met the criteria for pre-loss grief, and around 10% reported moderate to severe levels of demoralization. Caregivers who had a probable anxiety and/or depressive disorder also reported higher levels of pre-loss grief.

Conclusion
This study provides further evidence of the prevalence of poor psychosocial well-being in this population. The results reinforce the need to develop suitable strategies for psychological and social support for family caregivers.

A qualitative examination of the experience of 'depression' in hospitalized medically ill patients

Background: Research into depression in the medically ill has progressed without sufficient attention being given to the validity, in this group, of the taxonomic categories. We aimed to describe, using qualitative interviews, the experience of 'being depressed', separating experiences that are unique to depression from experiences that are common to being ill and in hospital.
Method: Forty-nine patients hospitalized for medical illness underwent a 30-min interview in which they were asked to 'Describe how you have been unwell and, in particular, how that has made you feel.' From the transcripts, a 'folk' taxonomy was constructed using a phenomenological framework involving four steps: frame elicitation to identify the important themes, componential analysis to systematically cluster the attributes into domains, a comparison of the experiences of patients screening depressed and  not-depressed, and a theoretical analysis comparing the resulting taxonomy with currently used theoretical constructs.
Results: Experiences common to all patients were being in hospital, being ill or in pain, adjusting to not being able to do things, and having time to think. In addition, all participants described being depressed, down or sad. Patients who were identified by screening as being depressed described unique experiences of depression, which included 'having to think about things' (a forceful intrusive thinking), 'not being able to sleep', 'having to rely on others', 'being a burden' to others (with associated shame and guilt), feelings of 'not getting better' and 'feeling like giving up'. Theoretical analysis suggested that this experience of depression fitted well with the concept of demoralization described by Jerome Frank.
Conclusions: Demoralization, which involves feelings of being unable to cope, helplessness, hopelessness and diminished personal esteem, characterizes much of the depression seen in hospitalized medically ill patients

Is Living With Psychosis Demoralizing? Insight, Self-stigma, and Clinical Outcome Among People With Schizophrenia Across 1 Year

Lack of insight is a major target in the treatment of schizophrenia. However, insight may have undesirable effects on self-concept and motivation that can hinder recovery. This study aimed to examine the link between insight, self-stigma, and demoralization as predictors of symptoms and functioning. Insight, self-stigma, depressive and psychotic symptoms, and functioning were assessed among 133 outpatients with schizophrenia at baseline and 12 months later. The data were analyzed by hierarchical multiple linear regressions. More insight at baseline and an increase in self-stigma over 12 months predicted more demoralization at follow-up. Insight at baseline was not associated with any outcome variable, but self-stigma at baseline was related to poorer functioning and more positive symptoms at follow-up. More demoralization at baseline predicted poorer functioning 12 months later. Demoralization did not mediate the relationship between self-stigma at baseline and functioning after 1 year. Given the decisive role of self-stigma regarding recovery from schizophrenia, dysfunctional beliefs related to illness and the self should be addressed in treatment. Different psychotherapeutical approaches are discussed.

Cuerpo desmembrado, ruptura de la percepción : reflexiones sobre "El teatro y su doble", de Antonin Artaud, a partir de una escena de "El chorro de sangre"

La escena inicial de El Chorro de sangre, mientras una pareja se jura amor eterno (de manera repetitiva y mecánica), llueven sobre el escenario partes del cuerpo humano. En este trabajo pretendo demostrar que Artaud pensó esa lluvia de extremidades desde una recepción sensorial. Es decir, la estrategia del disjecta membra responde a su concepción de un teatro de los sentidos que, como lo señala en El teatro y su doble, busca provocar una “revolución del espíritu". Si el cuerpo es espacio de las luchas entre un “interior" libre y caótico, y las presiones “exteriores", sociales, la fragmentación revela la energía excedente del ser humano por sobre esos controles, la capacidad de resistencia y superación. Para expresar esa resistencia, Artaud apela a la carnavalización del cuerpo que, como lo afirma Bajtín, produce una serie de transgresiones en tanto crítica y resistencia. Así, el cuerpo desmembrado trae a la superficie los miedos y tabúes sobre la muerte, la unidad del cuerpo humano y la inviolabilidad del cadáver. Se concluye que interpretar la lluvia de extremidades humanas requiere comprender El chorro de sangre como la puesta en escena de los principios surrealistas de subversión y desmoralización y, al mismo tiempo, que el cuerpo como objeto central de la representación carnavalesca problematiza tópicos filosóficos como la percepción y la existencia del ser.

End games: Euthanasia under interminable scrutiny

It is increasingly asserted that the disagreements of abstract principle between adversaries in the euthanasia debate fail to account for the complex, particular and ambiguous experiences of people at the end of their lives. A greater research effort into experiences, meaning, connection, vulnerability and motivation is advocated, during which the euthanasia 'question' should remain open. I argue that this is a normative strategy, which is felicitous to the status quo and further medicalises the end of life, but which masquerades as a value-neutral assertion about needing more knowledge.

Development of the Sphere Overlap Scale (SOS) : compartmentalization and the spillover hypothesis

The purpose of this study was to create a scale that could measure compartmentalization. In the first of two studies 311 working undergraduates were asked to indicate agreement with 119 items that measured compartmentalization. The resulting scale's reliability and validity were evaluated by having a second sample of 312 working students complete the items that comprise a sphere overlap scale, two measures of spillover, and a measure of personality, coping, and demoralization. Although the study's original goal was not realized, its procedures were successful in developing a short (10-item) measure of work-to-home spillover whose items loaded on a single factor. Structural equation modeling indicated that SOS items were correlated with existing measures of spillover and could be discriminated from related concepts of personality and coping. The SOS was also more highly correlated with demoralization than existing measures of spillover in hierarchical analyses that controlled for demographic factors, personality characteristics, and coping style. It is concluded that the SOS shows enough promise to warrant the cost of its appraisal as an alternative measure of spillover in a longitudinal study.

A esperança do doente em contexto de cuidados continuados

Enquadramento: Actualmente existe um elevado números de pessoas em situação de dependência, com algum tipo de incapacidade funcional ou em risco de perda de funcionalidade, que necessitam ingressar na Rede Nacional de Cuidados Continuados com o intuito de se promover uma melhoria das condições de vida e bem-estar das pessoas, através da prestação de cuidados continuados de saúde e de apoio social. Aceitando a vulnerabilidade da pessoa humana, a doença revela-se como um período de fragilidade circunstancial às condições decorrentes da sua existência. O utente/família deparam-se com a desmoralização, a ameaça, o desamparo e a perda de sentido, podendo levar o mesmo a uma profunda tristeza, desespero e sofrimento. Neste sentido e tendo em conta que a esperança influencia o bem-estar e uma vez que se encontra ligada à existência, tanto física como emocional e espiritual é fundamental percebermos até que ponto a esperança pode ajudar a pessoa a lidar com o futuro. Objetivos: Avaliar níveis de esperança nos Doentes internados em Cuidados Continuados, e identificar determinantes socio-demográficos, clínicas e psicossociais correlacionadas com essa esperança. Métodos: O estudo foi realizado,na Unidade de Cuidados Continuados da Santa Casa da Misericórdia de Seia, nas unidades de internamento de Média Duração e Reabilitação e Unidade de Longa Duração e Manutenção. O questionário foi aplicado a 46 doentes, com idades compreendidas entre os 46 e os 92 anos de idade ( x =74.39 anos). Trata-se de um estudo não experimental, quantitativo, do tipo transversal, descritivo e correlacional. O instrumento de recolha de dados integrou um Questionário de caracterização sócio-demográfica e clínica, a escala da Esperança (Herth Hope Index), uma escala para a avaliação da Qualidade de Vida – Functinal Assessement of Cancer Therapy – General e o Questionário de Sono de Oviedo. Resultados: Os dados mostram que 45,7% dos participantes apresenta esperança reduzida, 39,1% esperança elevada e 15,2% esperança moderada. Constatámos ainda que apenas o “bem-estar funcional” da escala da QDV e os “fenómenos adversos” da escala do sono se correlacionam significativamente (p=0,000; p=0,035) com a esperança explicando respetivamente 55,2% e 31,1% da variância explicada. Já o género, idade, estado civil, situação profissional, escolaridade, rendimento mensal, tipologia e número de internamentos, mostraram não estar relacionados com a esperança dos nossos doentes. Conclusão: A esperança é uma crença ou virtude inerente ao Homem, que pode assumir níveis diferenciados, que acompanha o ser humano no seu processo de viver e de morrer condicionando ajustes nos momentos de crise, afectando e/ou sendo afetada pelo bem-estar e a qualidade de vida. Palavras-chave: Cuidados Continuados, Esperança, Qualidade de Vida, Doentes, Sono.