Palliative care and its own identity, through an autoethnography: do you recognize these patterns?

Introduction: After more than 25 years working in palliative care (PC) observing thousands of patients and family behaviors, I use my long experience and notes as a source of data for a qualitative research study. The aim is to identify frequent families' behavior patterns in PC and better describe the culture in PC. Methods: This article is part of a larger project, using autoethnography as methodology, with the aim of helping doctors and interested health professionals better understand the culture and reality of PC. The focus is not the author but patients and families' patterns of social behavior - the social context - within the end-of-life period and how to deal with these professionally. Confidentiality and privacy of patients' data were guaranteed. Results: The vast number of treated cases, the regular observation and recording, and the continuous reflection and analysis over many years have led to these results. Due to editorial restrictions, in this article I only describe four of at least eight typical scenarios I have identified. Each is given a short title and I explore some of their inside-issues, integrating previous knowledge, research, and explanations, with practical suggestions on how to deal with them. Significance: As far as we know, these scenarios/patterns have never been described in this way. This work expands knowledge, innovates, and contributes to better describing PC culture. The final goal is to create a set of scripts that can be used to help clinicians quickly identify the clinical situation and how to deal with it in clinical practice. Reflecting on how patients and families frequently behave in PC can be very useful and then teach other professionals to better deal with these challenges.

[Delirium: The 7th Vital Sign?] / Delirium: O 7º Parâmetro Vital?

INTRODUCTION: Delirium is an acute, transient and fluctuating neuropsychiatric syndrome that is common in medical wards, particularly in the geriatric and palliative care population. MATERIAL AND METHODS: We present a brief literature review of the definition, pathophysiology, aetiology, diagnosis, prevention and treatment of delirium and its social and economic impact. RESULTS AND DISCUSSION: Delirium is under-recognized, especially by health professionals, and is associated with higher morbidity, mortality and economic burden. Moreover, the presence of delirium interferes with the evaluation and approach to other symptoms. Furthermore, it causes significant distress in patient's families and health professionals. The best treatment for delirium is prevention which is based on multidisciplinary interventions that addresses the main risk factors. The scientific evidence for the treatment of delirium is scarce. Non-pharmacological approaches are usually the first choice, and includes environmental, behavioural and social strategies. Pharmacological options, mainly antipsychotics, are a second-line treatment used essentially to prevent self harm. CONCLUSION: The recognition and prevention of delirium are crucial. Health professional education and training, patient clinical monitoring and families support are mandatory. Considering the impact of delirium on patients, relatives, health services and professionals we must be more aware of delirium and, why not, make it the 7th vital sign.

Introdução: O delirium é uma síndrome neuropsiquiátrica transitória e flutuante com início súbito frequente nos doentes internados, em particular na população geriátrica e paliativa. Material e Métodos: Através de uma breve revisão da literatura, os autores propuseram-se a sistematizar a definição, fisiopatologia e etiologia do delirium, principais ferramentas para o seu diagnóstico, prevenção e tratamento, bem como o seu impacto socio-económico.Resultados e Discussão: O delirium é uma entidade pouco reconhecida pelos profissionais de saúde, que se associa a maior morbi-mortalidade e custos, interfere com a avaliação e abordagem da dor e de outros sintomas e acarreta elevado distress nos doentes, famílias e profissionais de saúde. O melhor tratamento do delirium é a prevenção, que se baseia em intervenções multidisciplinares sob os principais fatores de risco para o seu desenvolvimento. A evidência científica para o tratamento do delirium existe, mas é escassa, sendo a terapêutica preferencial a não farmacológica, com implementação de estratégias ambientais, comportamentais e sociais. O tratamento farmacológico é de segunda linha e deverá ser instituído de forma a prevenir que o doente se coloque em risco, nomeadamente através do uso de antipsicóticos. Conclusão: O reconhecimento e prevenção do delirium são essenciais, pelo que é fundamental a educação e formação dos profissionais de saúde, bem como o acompanhamento e apoio aos familiares. É por todo o impacto que tem nos serviços de saúde, nos profissionais e, sobretudo, nos doentes e seus familiares, que sugerimos maior atenção ao delirium e, porque não, passar a considerá-lo como o 7º sinal vital.

Symptomatic Control in End-of-Life Patients.

End-of-life patients present a variety of symptoms that cause suffering for them and their respective families. Health professionals throughout their university, internship and medical careers are ill-prepared to manage and improve the quality of life of these patients. This article aims to provide basic skills in the symptomatic management of end-of-life patients, focusing in particular on the control of pain, dyspnoea, fatigue, nausea, vomiting and anorexia. It also aims to draw attention to basic concepts of control concerning refractory symptoms and palliative sedation.

Doentes em fim de vida apresentam uma multiplicidade de sintomas que são causa de sofrimento para os próprios e respetivas famílias. Os profissionais de saúde ao longo da faculdade, internato e carreira médica são pouco preparados para gerir e melhorar a qualidade de vida destes doentes. O presente artigo pretende fornecer competências básicas no controlo sintomático dos doentes em fim de vida, focando em particular o controlo da dor, dispneia, fadiga, náuseas, vómitos e anorexia. Pretende-se ainda alertar para conceitos básicos sobre controlo de sintomas refratários e a sedação paliativa.