Eficácia da terapia da dignidade no sofrimento psicossocial de doentes em fim de vida seguidos em cuidados paliativos : ensaio clínico aleatorizado e controlado

Tese de doutoramento, Ciências e Tecnologias da Saúde (Cuidados Paliativos), Universidade de Lisboa, Faculdade de Medicina, 2014A dignidade é um conceito complexo e, apesar de ser utilizado coloquialmente naporlinguagem diária e até em documentos científicos e normativos, não existe uma definição consensual. Na Medicina, em particular, a sua utilização tornou-se generalizada e massificada e por vezes, vazia de significado. Esta aparente vacuidade conceptual alertou para a necessidade de clarificar o seu significado e importância para a prática clínica, com recurso a evidência científica suportada em ensaios clínicos. Sobretudo a partir da década de 90, começou a emergir investigação de qualidade em dignidade e Medicina. O considerável salto investigacional qualitativo e quantitativo deu-se, pórem, com o trabalho de Chochinov et al. com a construção do Modelo da Dignidade de Doentes em Fim de Vida e com a posterior criação da Terapia da Dignidade (TD). Esta intervenção psicoterapêutica breve foi projectada para responder à angustia psicossocial e existencial de doentes em fim de vida, convidando-os a relatar e discutir questões de vida que lhes são mais importantes, articulando-as para que sejam lembradas, após a morte que se aproxima. Estas discussões e lembranças são gravadas em registo áudio, transcritas e editadas num documento de legado final que, normalmente é entregue a familiares ou outros entes queridos. Os resultados do último ensaio clínico multicêntrico de Chochinov et al. sobre a eficácia da TD em diversas áreas do sofrimento físico, psicossocial e existencial face a duas outras intervenções (intervenção paliativa multidisciplinar [IPM] e terapia centrada no doente [TCD]) mostraram que está por intervenção psicoterapêutica aumentava o sentido de utilidade de vida, a qualidade de vida, o sentido de dignidade, melhorando a forma como a família via e apreciava os doentes em fim de vida. A TD foi também significativamente melhor do que a TCD na melhoria do bem-estar espiritual, na diminuição da depressão e na satisfação avaliada na pós-intervenção. Contudo, e apesar da existência de um cada vez mais sólido conjunto de evidência científica, não existia ainda investigação de TD em países mediterrânicos e, sobretudo, não era conhecida a eficácia desta intervenção breve em populações de pessoas em fim de vida com elevado nível de sofrimento psicológico e existencial como era o caso da amostra de doentes portugueses que serviu de base a este estudo. Neste sentido, iniciamos um ensaio clínico aleatorizado e controlado (EAC) com o objetivo de conhecer a eficácia da TD, face a um grupo controlo (submetido a IPM), na patologia psicossocial e sentido de dignidade de doentes em fim de vida com elevado nível de sofrimento psicológico, internados na Unidade de Cuidados Paliativos Bento Menni da Casa de Saúde da Idanha. Quisemos, também, estudar a eficácia da TD nos sintomas físicos, na qualidade de vida e na sobrevivência, assim como a satisfação global após a realização da TD e o impacto da entrega do documento de legado na saúde mental do principal cuidador. Foram incluídos no EAC 80 doentes: 39 alocados ao grupo da TD+IPM e 41 ao grupo da IPM. Todos os doentes deram o seu consentimento para a participação neste EAC, o qual obteve aprovação pela comissão de ética local e da Faculdade de Medicina da Universidade de Lisboa. Foi realizado um follow-up de 30 dias. As conclusões mais relevantes do nosso estudo foram as seguintes:por1) a TD mostrou-se eficaz nos sintomas depressivos e ansiosos de doentes em fim deporvida seguidos em CP, face ao grupo controlo, no período de follow-up de 30 dias o que nos parece um achado de importância clínica crucial no alívio deste tipo de sintomatologia Em pessoas com prognóstico reservado;por2) a TD mostrou ser também eficaz noutras variáveis do sofrimento psicossocial, nomeadamente na desmoralização e no desejo de antecipação de morte;por3) a TD revelou, corroborando a evidência publicada, ser eficaz no alívio do sofrimento relacionado com a perda de dignidade e na melhoria da qualidade de vida;4) ao contrário de outros estudos publicados, a TD foi oferecida a todos os doentes sem exclusão daqueles com sintomas ansiosos e/ou depressivos classificados como “clinicamenteporsignificativos”, utilizando a Hospital Anxiety & Depression Scale, provando que, mesmo na presença de sofrimento psicológico significativo, os doentes em fim de vida podem realizar a TD sem que deturpem a sua narrativa de vida por sintomatologia depressiva como negativismo, atitude de autocomiseração e culpa;por5) apesar de outros estudos anteriores terem mostrado uma elevada satisfação dos doentes submetidos a TD, os resultados do nosso estudo revelam valores superiores;por6) este e o primeiro EAC a propor-se estudar a sobrevivência de doentes submetidos a TD, face a um grupo controlo submetido apenas a IPM. O nosso ensaio mostrou que os participantes alocados ao grupo de intervenção sobreviveram, em média, mais 5,3 dias do que os alocados ao grupo da IPM. No futuro, pensamos que a TD podera continuar a demonstrar novas e promissoras características aplicáveis a clinica e, sobretudo, ao doente individual e à sua família.Dignity is a complex concept and, despite being used colloquially in everyday language and even in scientific and regulatory documents, there is no agreed and universal definition. In Medicine in particular, its use has become widespread and sometimes devoid of significance. This apparent conceptual emptiness, warranted of the need to clarify its meaning and importance in clinical practice, using scientific evidence as a hallmark, using solid randomized controlled trials. Especially since the 90s, quality research began to emerge in the issue of dignity and medicine. But the qualitative and quantitative investigation leap was given with the work of Chochinov et al., with the construction of the Dignity Model of the Terminal-ill and the subsequent creation of Dignity Therapy (DT). This brief psychotherapeutic intervention was designed to address the psychosocial and existential distress of patients at end of life, inviting patients to report and discuss life issues that are most important to them, linking them to be remembered after death. These discussions and memories are recorded in audio, transcribed and edited into a final legacy document that is usually given to family members or other loved ones. Currently, the Dignity Model and DT – both derived from empirical evidence – are available as technical interventions to understand and enhance dignity at the end-of-life. The results from the latest multicentric randomized controlled trial of Chochinov et al. about the effectiveness of DT in various areas of physical, psychosocial and existential suffering (with two other study arms: standard palliative care [SPC] and client-centred care [CCC]) showed that DT increased the meaning of life, quality of life, sense of dignity, and also the way family members saw and enjoyed patients at the end of their life. DT was also significantly better than the CCC in improving spiritual well-being, and it also decreased depression and improved satisfaction assessed at post-intervention. However, despite the existence of an increasingly robust set of scientific evidence, there was lacking data about DT´s efficacy in the Mediterranean population and, above all, despite the beneficial effects of DT, its ability to mitigate outright distress was yet to be proven, and we knew our palliative care sample of patients had a high level of psychological distress. Therefore, we initiated a randomized controlled trial (RCT) in order to know the effectiveness of DT compared with a control group (SPC), on the psychosocial suffering and sense of dignity of terminally-ill patients with high levels of psychological distress, admitted to the Palliative Care Unit of Sao Bento Menni of Casa de Saude da Idanha. We also wanted to study the effectiveness of DT in physical symptoms, quality of life and survival, as well as the level of satisfaction after performing DT and the caregiver’s mental health impact after receiving the legacy document. Eighty patients were included in our RCT: 39 allocated to the DT+SPC and 41 to SPC group. All patients gave their informed consent for participation the study and ethical approval was obtained. A 30 day follow-up was made. The main findings of our study were the following: 1) DT was effective in reducing depressive and anxious symptoms compared with the control group; this effect was consistent through the 30 day follow-up period. This finding seems to have a crucial clinical importance in relieving psychological symptoms in patients with a poor prognosis; ; 2) following the same trend, DT showed to be effective on other psychosocial variables, such as demoralization, desire for death, sense of dignity and quality of life; 3) unlike other published studies, in our RCT, DT was offered to every patient without exclusion of those with “clinically significant” anxious or depressive symptoms, assessed using the HADS; this proves that, even in the presence of significant psychological distress, patients can perform DT without misrepresentation of their life’s narrative; 5) although previous studies have shown high satisfaction of patients undergoing DT, the results of our trial showed higher satisfaction values; 6) to the best of our knowledge, this is the first RCT to propose to study the survival of patients receiving TD, compared with a control group subjected only to SPC. Our results showed that participants allocated to the intervention group survived an average of 5,3 days more than the group allocated to SPC . In the future, we think that DT will continue to demonstrate new and promising features applicable to clinical practice and especially to individual patients and their families

The efficacy of dignity therapy on the psychological well-being in loved ones of terminally III patients

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Translation and validation of the Portuguese version of the surprise question

Translation and validation of the Portuguese version of the surprise question(undefined)info:eu-repo/semantics/publishedVersio

Effect of dignity therapy on end-of-life psychological distress in terminally ill Portuguese patients: A randomized controlled trial

Objective: Dignity therapy (DT) is a brief form of psychotherapy developed for patients living with a life-limiting illness that has demonstrated efficacy in treating several dimensions of end-of-life psychological distress. Our aim was to determine the influence of DT on demoralization syndrome (DS), the desire for death (DfD), and a sense of dignity (SoD) in terminally ill inpatients experiencing a high level of distress in a palliative care unit. Method: A nonblinded phase II randomized controlled trial was conducted with 80 patients who were randomly assigned to one of two groups: the intervention group (DT + standard palliative care [SPC]) or the control group (SPC alone). The main outcomes were DS, DfD, and SoD, as measured according to DS criteria, the Desire for Death Rating Scale, and the Patient Dignity Inventory (PDI), respectively. All scales were assessed at baseline (day 1) and at day 4 of follow-up. This study is registered with http://www.controlled-trials.com/ISRCTN34354086. Results: Of the 80 participants, 41 were randomized to DT and 39 to SPC. Baseline characteristics were similar between the two groups. DT was associated with a significant decrease in DS compared with SPC (DT DS prevalence = 12.1%; SPC DS prevalence = 60.0%; p < 0.001). Similarly, DT was associated with a significant decrease in DfD prevalence (DT DfD prevalence = 0%; SPC DfD prevalence = 14.3%; p = 0.054). Compared with participants allocated to the control group, those who received DT showed a statistically significant reduction in 19 of 25 PDI items. Significance of results: Dignity therapy had a beneficial effect on the psychological distress encountered by patients near the end of life. Our research suggests that DT is an important psychotherapeutic approach that should be included in clinical care programs, and it could help more patients to cope with their end-of-life experiences.info:eu-repo/semantics/publishedVersio

What we learned in kindergarten: five tips for collaboration in oncology

As you read the five tenets presented here, think about these simple truths of leading and influencing others, managing failure, thinking strategically, and resolving conflicts. Ap - ply them to the world in which we all now live and play. Far too often work (the place) is viewed simply as where work (the action) occurs. What we are saying is that, although institutional targets (such as reducing wait times to see new patients) are all laudable goals, there has to be more, and play has to become an essential component of work. What can we uncover, rediscover, and create to make the time spent with one another the best possible experience for everyone involved? Even more importantly, what must we do to ensure that what we create and share has the possibil - ity and potential to make our lives and the world a better place? Play isn’t something we do as a part of life—it is life.info:eu-repo/semantics/publishedVersio

Is it useful to ask "Está deprimido?" ("Are you depressed?") to terminally-ill Portuguese patients? Results from outpatient research

OBJECTIVES: Depression is a serious psychological problem in the palliative care setting. Brief screening tools for depression are lacking and need to be brief and acceptable. This study aimed to identify the properties of the single Portuguese question "Está deprimido?" ("Are you depressed?") to screen for depression. METHODS: Retrospective study from 100 patient's medical records identifying the answers on the single Portuguese question for depression "Está deprimido?" ("Are you depressed?") and the HADS depression sub-scale, using a score ≥11 on the latter as the gold standard for clinically significant depressive symptoms. Sensitivity, specificity, positive predictive and negative values were calculated. RESULTS: Response rate for the single Portuguese question for depression was 100%. Prevalence of depression symptoms (HADS-d ≥ 11) was 43%. To the question "Está deprimido?" 60 patients responded "yes." Sixteen patients who replied "no" to the single question had clinically significant depressive symptoms based on the HADS depression sub-scale. The single tool had 65.2% sensitivity, 49.2% specificity and 50.0% and 64.4% of positive predictive and negative values, respectively. SIGNIFICANCE OF RESULTS: In this first preliminary retrospective Portuguese study, the single question for depression has shown poor screening properties. Future research in larger and mixed patientś samples of Portuguese terminally ill is necessary to find more accurate and robust properties of this brief tool

Refrigeration needs for sustainable preservation of horticultural products

Fresh horticultural products are highly perishable and need refrigeration for further preservation. Refrigeration needs energy consumption with consequent economical cost and damage for the environment. The objective of the present work was to use efficiently the refrigeration according to the product needs and time for consumption. Salicornia ramosissima and Sarcocornia perennis fresh branch tips, which are used for fresh salads, were stored at 1, 4 and 9 °C for up to 21 days. In both species, fresh tips were of good consumer acceptability for up to 14 days at 9°C. At 1 and 4 °C fresh tips could be stored in good conditions up to 21 days. For efficient use of energy in refrigeration of fresh salicornia and sarcocornia we conclude that if it is to put those products in the market earlier we can use the higher temperature for storage saving energy. Only for further storage we shall use the lower temperatures

Asymptomatic carotid bruit

Cerebrovascular events are responsible for high morbidity and mortality, and carotid atherosclerosis with vascular stenosis is a major etiological factor in cerebrovascular disease. Carotid bruit is an important marker of generalized atherosclerosis. On the basis of good quality studies, we can conclude that it indicates an increased risk of cerebrovascular events and acute myocardial infarction, with the degree of carotid stenosis and presence of ischemic heart disease as the most important predictive factors. Management can be medical (risk factor modification and antiplatelet therapy) or surgical (endarterectomy). In this review article we briefly discuss the management of asymptomatic carotid bruit based on the main studies published in the last few years addressing cardiovascular event prevention in carotid atherosclerosis.Os eventos cerebrovasculares são responsáveis por elevada morbilidade e mortalidade e a aterosclerose carotídea com estenose constitui uma etiologia major neste contexto. O sopro carotídeo revela-se como um importante marcador de doença aterosclerótica generalizada. Baseados em estudos de boa qualidade, é possível concluir que existe um aumento do risco de eventos cerebrovasculares e de enfarte agudo do miocárdio em indivíduos com sopro carotídeo assintomático, sendo os factores preditivos mais importantes a gravidade da estenose carotídea e a presença de doença cardíaca isquémica concomitante. A abordagem pode ser médica (modulação de factores de risco e terapêutica anti-agregante plaquetária) ou cirúrgica (endarterectomia). Neste artigo de revisão discutimos brevemente a abordagem prática no sopro carotídeo, utilizando os estudos mais importantes publicados nos últimos anos sobre a prevenção de eventos cardiovasculares na aterosclerose carotídea.info:eu-repo/semantics/publishedVersio

Children's emotional understanding of death: response to Silva et al paper

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Letter to the editor: the concept of dignity in non-institutionalized elderly people cared for in primary health care: a preliminary empirical model

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