Narrative review: what constitutes contemporary, high-quality end-of-life care and can lessons be learned from medieval history?

BACKGROUND AND OBJECTIVE: In modern Britain, palliative and end-of-life care is governed by quality standards and guidance, which should consider spiritual and psychological needs. However, there are significant gaps in provision of services which was highlighted during the coronavirus disease 2019 (COVID-19) pandemic where many individuals and families suffered profound spiritual and existential distress. Significant gaps remain in the provision of services to support patients with spiritual and psychological needs which can affect the management of physical symptoms. During the medieval period in Western Europe, it was important to prepare well for death throughout life. It has been suggested that lessons may be learned from medieval preparations for death which might benefit those approaching end-of-life in contemporary society. It is therefore timely to consider medieval attitudes to death and reflect on how these might inform modern end-of-life care. The objective of this review is to synthesise literature addressing modern end-of-life care in the UK and contrast this with literature on preparations for death during the medieval period in Western Europe. Our aim is to determine whether there is wisdom to be gained from history which could inform our approaches to end-of-life care today. METHODS: Using online databases and broad keyword searches along with experts in the field of medieval history, we identified literature and translations of texts with a focus on preparations for death during both periods. These were narratively synthesised and discussed. KEY CONTENT AND FINDINGS: A key finding is that the medieval attitude to death was as an integral part of life, whereas in modern society death is not usually considered until the situation arises. The review highlights a need for a better understanding of the individuality of spiritual and existential needs during end-of-life care in modern society, which will vary according to individual choice, culture, societal group, religion, and belief. CONCLUSIONS: The lessons we can learn from our medieval counterparts include the need for lifelong and individual preparations for the end of life, with emphasis on spiritual needs. Alongside palliative interventions, we need to take time to appreciate what gives individuals spiritual support and provide the resources to facilitate this.

Historical Notes on the Founding of the Surgical Palliative Care Society.

The latter half of the twentieth century witnessed the emergence of the hospice movement as a response to the increasing medicalization of death and the associated suffering. Palliative care, a term coined by the Canadian urologic surgeon Balfour Mount, represents an expansion of hospice philosophy upstream within the health care system extending to the care of hospitalized patients with life-threatening illnesses. This article offers a brief history of the development of surgical palliative care, i.e., palliative care directed specifically toward relief of suffering associated with serious surgical illnesses and culminating in the formation of the Surgical Palliative Care Society.

Abordagem homeopática em cuidados paliativos

Live com a Dra. Margarida Haddad. "Cuidados Paliativos” é uma área do cuidado que trata do paciente e da família. E tem um conjunto de orientações e informações claras e diretas que apoiam e facilitam o empenho dos familiares que estão cuidando de parentes doentes. "A experiência de ter alguém doente na família é um tempo único que contribui para o amadurecimento e crescimento pessoal de todos os membros. Aceitação, amor, altruísmo, carinho e homeopatia amenizam todas as dificuldades. O olhar do médico homeopata para o modo peculiar de cada enfermo adoecer e viver sua limitação é imprescindível como terapêutica complementar, permite abrir os olhos e o coração para uma reformulação das concepções de vida mediante a cura da dor profunda ou do impedimento para enxergar a luz da consciência.

Análise da evolução histórica do conceito de cuidados paliativos: revisão de escopo / Análisis de la evolución histórica del concepto de cuidados paliativos: revisión de alcance / Analysis of the historical evolution of the concept of palliative care: a scoping review

Resumo Objetivo Analisar a evolução histórica do conceito de cuidados paliativos e identificar seus elementos essenciais. Métodos Revisão de escopo fundamentada no manual do Joanna Briggs Institute Reviewer's que incluiu as definições de cuidados paliativos oriundos de artigos científicos selecionados de bases e portais da saúde. Foram selecionados 21 estudos para análise. Utilizou-se o software IRaMuTeQ® para agrupamento dos dados. Resultados De 1993 a 2020 a definição de cuidados paliativos mais citada foi a da World Health Organization; a abordagem paliativa foi implementada nas esferas físicas, biopsicossociais e espirituais, a pacientes com enfermidades agudas ou crônicas para promover conforto, dignidade e qualidade de vida. Os elementos essenciais identificados nas definições foram: vida, cuidado, qualidade, família, equipe multidisciplinar, conforto e alívio. Conclusão Constatou-se amadurecimento na definição de cuidados paliativos, ao agregar elementos para garantia de qualidade de vida digna, independentemente do tipo de doença, e integrar família e equipe interprofissional nesse processo.

Resumen Objetivo Analizar la evolución histórica del concepto de cuidados paliativos e identificar sus elementos esenciales. Métodos Revisión de alcance fundamentada en el manual del Joanna Briggs Institute Reviewer's que incluyó las definiciones de cuidados paliativos provenientes de artículos científicos seleccionados de bases y portales de salud. Se seleccionaron 21 estudios para el análisis. Se utilizó el software IRaMuTeQ® para la agrupación de datos. Resultados De 1993 a 2020 la definición de cuidados paliativos más citada fue la de la World Health Organization. El enfoque paliativo fue implementado en la esfera física, biopsicosocial y espiritual a pacientes con enfermedades agudas o crónicas para promover bienestar, dignidad y calidad de vida. Los elementos esenciales identificados en las definiciones fueron: vida, cuidado, calidad, familia, equipo multidisciplinario, bienestar y alivio. Conclusión Se constató la maduración de la definición de cuidados paliativos al agregar elementos para garantizar la calidad de vida digna, independientemente del tipo de enfermedad, e integrar la familia y el equipo interprofesional en ese proceso.

Abstract Objective To analyze the historical evolution of the concept of palliative care and identify its essential elements. Methods This is a scope review based on the Joanna Briggs Institute Reviewer's manual, which included the definitions of palliative care from scientific articles selected from health databases and portals. Twenty-one studies were selected for analysis. The IRaMuTeQ® software was used to group the data. Results From 1993 to 2020, the most cited definition of palliative care was that of the World Health Organization. The palliative approach was implemented in the physical, biopsychosocial and spiritual spheres for patients with acute or chronic illnesses to promote comfort, dignity and quality of life. The essential elements identified in the definitions were life, care, quality, family, multidisciplinary team, comfort, and relief. Conclusion It was found that the definition of palliative care has matured, by adding elements to guarantee a dignified quality of life, regardless of type of disease, and integrating family and interprofessional team in this process.

[Withholding or withdrawing life-sustaining treatments in acute oncology situations: History and regulatory aspects in France]. / La « Limitation et/ou arrêt des thérapeutiques ¼ (LAT) en oncologie face à une situation aigüe : historique et aspects réglementaires en France.

The management of oncology patients, especially hospitalized patients, can lead to almost daily discussions regarding therapeutic limitations. Here, we review the history and propose a summary of the texts framing the notion of "withholding and withdrawing life-sustaining treatment" in oncology practice in France. This decision is regulated by the Claeys-Léonetti Law of February 2, 2016 recommending a collegial discussion and its documentation in the medical record. The decision to withhold or withdraw life-sustaining treatments is the subject of discussion between the patient, his physicians and his family and may take place at any time during his management. The work of intensive-care physicians provides many useful recommendations for acute oncology situations, however articles specific for oncology practice are scarce; this is a topic that oncologists must take up.

Now we are 30: 10 more years of MASCC.

This paper chronicles the third decade of MASCC from 2010. There was a generational change in this decade, building on the solid foundation of the founders. It included the first female President, and a new Executive Director with a background in strategy and business development and operations as applied to healthcare. The headquarters moved from Copenhagen to Toronto. The first meeting to be held outside of Europe or North America was held in Adelaide, Australia, and the membership in the Asia Pacific region expanded. A program of international affiliates saw national supportive care organisations formally link with MASCC. In cancer supportive care, there was a raft of new toxicities to manage as immunotherapies were added to conventional cytotoxic treatment. There was also a greater emphasis on the psychosocial needs of patients and families. New MASCC groups were formed to respond to this evolution in cancer management. The MASCC journal, Supportive Care in Cancer, continued to grow in impact, and MASCC published two editions of a textbook of supportive care and survivorship. The decade ended with the challenge of the COVID-19 pandemic, but that served to highlight the importance of good supportive care to patients with cancer.

Surgical Palliative Care-Where Are We in 2020?

The practice of surgical palliative care is not new. Dr Balfour M. M. Mount, a retired urologic surgeon is considered the father of North American Palliative Care and coined the term Palliative Care in 1975. Dr Geoffrey P. Dunn, a retired general surgeon and hospice and palliative medicine specialist along with other like minded surgical colleagues were instrumental in developing the field of surgical palliative care. Dr Olga Jonasson, championed the American Board of Surgery becoming one of the sponsoring boards of the Hospice and Palliative Medicine certifying exam. Dr Anne Mosenthal advocated for palliative care to be integrated as parallel clinical aims so espoused in the Trauma Quality and Improvement Program Palliative Care Best Practice Guidelines. Dr Mosenthal currently chairs the American College of Surgeons Committee on Surgical Palliative Care. This introductory article is a brief history about the origins of surgical palliative care and sheds light on the current landscape of surgeons integrating primary and specialty palliative care into surgical practice. The aim of this surgical palliative care symposium is to take everyday surgical problems and highlight the application and benefit of palliative care when treating surgical patients with serious illness. Integrating palliative care principles into standard clinical management is evidenced based patient-centered practice.

The Path of Cicely Saunders: The "Peculiar Beauty" of Palliative Care.

This paper is aimed at focusing on the writings and the experience of the Hospice movement Founder, Dame Cicely Saunders. The in-depth analysis carried out had the objective of verifying if "the way" of Cicely to understand, live and propose palliative care was still current and "beautiful", so that we can nowadays refer to her fascinating "Original Palliative Care". With "beauty" we mean, on the one hand, a way able to allow a personal path of research of the meaning of the disease and of the care, both for those who care and for those who are cared for. On the other hand, it seems to us that Cicely strongly suggests how this path can not be carried out alone, but is only possible within the context of a network of relationships and support, in a so called "relational autonomy", for the patient, included in a "care ethics". The authors believe that the work extensively documents as the overall approach of Cicely, traditional but always to be rediscovered, is still today the most convincing way of conception and action of palliative care.

Response to Suffering of the Seriously Ill Child: A History of Palliative Care for Children.

Most pediatric clinicians aspire to promote the physical, emotional, and developmental well-being of children, hoping to bestow a long and healthy life. Yet, some infants, children, and adolescents confront life-threatening illnesses and life-shortening conditions. Over the past 70 years, the clinician's response to the suffering of these children has evolved from veritable neglect to the development of pediatric palliative care as a subspecialty devoted to their care. In this article, we review the history of how clinicians have understood and responded to the suffering of children with serious illnesses, highlighting how an initially narrow focus on anxiety eventually transformed into a holistic, multidimensional awareness of suffering. Through this transition, and influenced by the adult hospice movement, pediatric palliative care emerged as a new discipline. Becoming a discipline, however, has not been a panacea. We conclude by highlighting challenges remaining for the next generation of pediatric palliative care professionals to address.

Palliative radiotherapy: history, recent advances, and future directions.

Radiotherapy has been used to palliate cancer symptoms since shortly after the time that X rays were discovered late in the 1800's. The 20th century witnessed improvements in treatment planning and delivery that permitted radiotherapy to serve as a successful, timely, and cost-efficient palliative intervention. Palliative radiation oncology has risen to the level of its own subspecialty, as evidenced by the formation of palliative radiation oncology clinical services and dedicated palliative radiotherapy guidelines, while additional changes have begun to alter the very definition and goals of palliative radiotherapy. Local treatment may now be offered with dual goals of symptom relief and the potential for increased disease-free or overall survival. While these new directions show great promise, novel strategies must be formulated to manage the increased complexity, workload, and cost of these approaches.

Atuação do psicólogo nos cuidados paliativos em cardiologia / The work f the psychologist in palliative care in cardiology

Trata-se de um artigo de reflexão que visa contextualizar, a partir da literatura e da prática, a atuação do psicólogo nos cuidados paliativos, especificamente em cardiologia. A abordagem dos cuidados paliativos em cardiologia está ainda sendo desenvolvida; teve origem com pacientes terminais de câncer. O psicólogo paliativista que atua junto à equipe multidisciplinar abrange várias áreas, como a biológica, psicológica, religiosa, espiritual, social e familiar. A atuação visa o atendimento aos pacientes, familiares e equipe, oferecendo suporte para a melhor qualidade de vida naquele momento. O psicólogo participa das conferências familiares, abre espaços para a discussão de casos, promove encontros multidisciplinares, cuida do burnout da equipe, lida com os conflitos e implementa as habilidades de comunicação. O instrumento fundamental para o trabalho é a melhora constante da comunicação, que visa agregar e harmonizar a equipe, diminuir os conflitos e impactos nas relações com o paciente, a família e os membros, esclarecendo, orientando e diminuindo a dor como um todo. Desse modo, cria uma rede de continência e um projeto terapêutico para as necessidades de cada paciente e família

This is a reflection article that aims to contextualize, based on the literature and practice, the work of the psychologist in palliative care, specifically in cardiology. The palliative care approach in cardiology is still being developed; it originated with terminal cancer patients. The palliative psychologist who works alongside the multidisciplinary team covers various areas such as biological, psychological, religious, spiritual, social and family-related. Their work aims to provide care to patients, families and staff, offering support for the best quality of life at that time. The psychologist participates in family meetings, opens spaces for discussion of cases, promotes multidisciplinary meetings, takes care of team burnout, deals with conflicts, and implements communication skills. The essential tool for the work is the constant improvement of communication, which aims to bring together and fine-tune the team, reduce conflicts and impacts in the relations with the patient, the family and the members, clarifying, guiding and reducing the overall pain. Thus, the psychologist creates a network of moderation and a therapeutic project for the needs of each patient and family

The Superior Cavopulmonary Connection: History and Current Perspectives.

The development of the superior cavopulmonary connection is a rich illustration of international influences in congenital cardiac surgery. The bidirectional Glenn and hemi-Fontan procedures have improved survival as both definitive and staged functional single ventricle palliation. The optimal timing of the second-stage superior cavopulmonary procedures varies by center but for low- and intermediate-risk patients, this may be within three to six months after the Norwood procedure. The list of risk factors continues to grow but the most frequently cited factors include atrioventricular valve regurgitation, decreased ventricular function, need for reintervention, and failure to attain nutritional and growth goals. Ongoing prospective, multi-institutional studies, particularly those fostered internationally by the World Society for Pediatric and Congenital Heart Surgery and other associations, will hopefully provide further clarification of the complex management issues related to patients with functional single ventricle physiology.

Psychedelics and Dying Care: A Historical Look at the Relationship between Psychedelics and Palliative Care.

This article examines the historical relationship between psychedelics and palliative care. Historians have contributed to a growing field of studies about how psychedelics have been used in the past, but much of that scholarship focused on interrogating questions of legitimacy or proving that psychedelics had therapeutic potential. Palliative care had not yet developed as medical sub-specialty, more often leaving dying care on the margins of modern, pharmaceutical-based treatments. As psychedelic researchers in the 1950s began exploring different applications for psychoactive substances such as LSD and mescaline, however, dying care came into clearer focus as a potential avenue for psychedelics. Before that application gained momentum in clinical or philosophical discussions, psychedelics were criminalized and some of those early discussions were lost. This article looks back at historical discussions about LSD's potential for easing the anxiety associated with dying, and considers how those early conversations might offer insights into today's more articulated discussions about psychedelics in palliative care.