Redarquía de la atención paliativa: una propuesta de trabajo dual / Palliative care networking hierarchy: a two-pronged approach

Los cuidados paliativos (CP) evolucionaron a partir de un movimiento contracultural en consonancia con otros movimientossociales de los años 60. Cicley Saunders puso en marcha una revolución silenciosa: un modelo científico, compasivo y eficientede “Cuidado total”1. En el siglo xxi el acceso a los CP es un derecho aún no tan accesible, ni antes ni durante la pandemiapor COVID-19. Se espera que aumente la necesidad de CP aproximadamente un 87 % en las próximas 4 décadas, afectandode forma desproporcionada a las personas que viven en la pobreza y a los mayores de 70 años, entre otros grupos2. En elmundo, cerca del 85 % de las personas no tienen garantizado ese derecho3. Cada uno/a de nosotro/as es parte interesada en este problema. (AU)

El valor de la colaboración multidisciplinaria / The value of multidisciplinary collaboration

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La pandemia interior / The inner pandemic

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Sobre el concepto de dolor total / On the concept of total pain

RESUMEN El dolor de los pacientes de cáncer ha sido descrito como dolor total. Tanto en la literatura científica, los libros de texto, así como en informes y directrices de la Organización Mundial de la Salud, el concepto de dolor total ha servido de trasfondo para promover la atención multidisciplinaria de pacientes cuyo dolor involucra también aspectos psicológicos, emocionales, espirituales y sociales. El objetivo de este artículo es proponer una caracterización del concepto de dolor total de manera tal que continúe jugando un papel central en la promoción de la atención multidisciplinaria propia de los cuidados paliativos. Primero, se presenta un bosquejo del concepto y de los diferentes usos en la literatura. Segundo, se hace un contraste con la definición del dolor de la Asociación Internacional para el Estudio del Dolor (IASP) para establecer la naturaleza y referente del concepto de dolor total. Tercero, se muestra cómo esta caracterización del concepto disuelve algunas tensiones en la literatura respecto a su uso adecuado. Se plantea que el concepto de dolor total hace referencia a aquellas relaciones causales entre el dolor y los estados psicológicos, emocionales, espirituales y sociales que han sido Identificadas como susceptibles de ser intervenidas por el modelo de atención paliativa multidisciplinar. Como conclusión, se recomienda no vincular el concepto de dolor total con el padecimiento de una enfermedad en particular, ni con qué tan limitante para la vida es la enfermedad; tampoco para referirse a la "experiencia global" del paciente, ni como un punto muy alto de una escala.(AU)

ABSTRACT The pain suffering in cancer patients has been described as "total pain". The concept of "total pain" plays a key role in the promotion of the multidisciplinary nature of palliative care. In palliative attention, suffering is conceptualized as an addition of physical, psychological, emotional, spiritual and social aspects. In this paper, I offer a characterization of the concept of "total pain", one which preserves its key role in palliative care promotion. First, I sketch the concept and some different usages found in the literature. Second, I establish the nature and referent of the "total pain" concept by means of showing the contrast between it and the pain definition provided by the International Association for the Study of Pain (IASP). Third, I propose that the concept of "total pain" refers to the relevant causal chains identified by the palliative care research as elements susceptible of intervention for the purpose of alleviating patient's suffering. These causal chains feature and link physical, psychological, emotional, spiritual and social aspects of the patient's suffering. As conclusion, I add the recommendation to not associate the concept of "total pain" with any particular diagnostic or disease or any particular prognosis, neither to the global experience of the patient, nor treat it as a high point on a scale.(AU)

The use of olanzapine as an antiemetic in palliative medicine: a systematic review of the literature.

BACKGROUND: Olanzapine is an atypical antipsychotic that has affinity for many central nervous system receptors. Its efficacy is supported by several studies in the prevention and treatment of chemotherapy-induced nausea and vomiting. No recommendations exist on the antiemetic use of olanzapine in the palliative care setting. The aim of this work is to complete the initial work of Fonte et al. published in 2015, to determine whether the literature supports the use of olanzapine as an antiemetic in palliative situations and, in practice, to propose a therapeutic schema adapted to the palliative setting. METHODS: Systematic review of the literature according to the PRISMA criteria. We searched the PubMed, Cochrane, RefDoc, EMBase databases and the gray literature databases. The bibliographic search was conducted between November 2016 and August 2017. RESULTS: Thirteen articles were included: 2 case studies, 3 case series, 3 retrospective studies, 2 prospective studies, 2 literature reviews. All studies concluded on the efficacy of olanzapine as an antiemetic in the palliative care setting. No serious adverse effects were reported. Based on the data from the literature review, we propose a therapeutic scheme adapted to the palliative care context. CONCLUSION: Action of olanzapine on many receptors and its tolerance profile make it an interesting antiemetic treatment in palliative medicine. But to date, studies are scarce and have a low statistical power. Further investigation is therefore needed to determine the benefit of this treatment in palliative care patients, compared to usual treatments.

Nature-based supportive care opportunities: a conceptual framework.

OBJECTIVE: Given preliminary evidence for positive health outcomes related to contact with nature for cancer populations, research is warranted to ascertain possible strategies for incorporating nature-based care opportunities into oncology contexts as additional strategies for addressing multidimensional aspects of cancer patients' health and recovery needs. The objective of this study was to consolidate existing research related to nature-based supportive care opportunities and generate a conceptual framework for discerning relevant applications in the supportive care setting. METHODS: Drawing on research investigating nature-based engagement in oncology contexts, a two-step analytic process was used to construct a conceptual framework for guiding nature-based supportive care design and future research. Concept analysis methodology generated new representations of understanding by extracting and synthesising salient concepts. Newly formulated concepts were transposed to findings from related research about patient-reported and healthcare expert-developed recommendations for nature-based supportive care in oncology. RESULTS: Five theoretical concepts (themes) were formulated describing patients' reasons for engaging with nature and the underlying needs these interactions address. These included: connecting with what is genuinely valued, distancing from the cancer experience, meaning-making and reframing the cancer experience, finding comfort and safety, and vital nurturance. Eight shared patient and expert recommendations were compiled, which address the identified needs through nature-based initiatives. Eleven additional patient-reported recommendations attend to beneficial and adverse experiential qualities of patients' nature-based engagement and complete the framework. CONCLUSIONS: The framework outlines salient findings about helpful nature-based supportive care opportunities for ready access by healthcare practitioners, designers, researchers and patients themselves.

Recent advances in non-surgical management of cancer in the elderly.

This article summarizes the seminal publications from mid-2016 through 2017 in the area of medical care for older adults with cancer. Areas addressed include chemotherapy tolerance and efficacy in the aged, geriatric fitness assessments, and advancements in palliative and supportive care. The practice-changing finding from this past year's publications is that antipsychotics should not be used in the management of terminal delirium in older adults receiving palliative care. The other trials demonstrated an improved understanding of the utility of geriatric assessments in patients with cancer, developed the body of information about which chemotherapy agents are safe and effective in older adults (and which are not), and expanded our understanding of good palliative and supportive care.

Los últimos románticos... / The last of the romantics...

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Matriz de competências de medicina paliativa para o geriatra / Competency framework of palliative medicine for geriatricians

INTRODUÇÃO E OBJETIVO: Apesar da grande interface entre cuidados paliativos (CPs) e geriatria, ainda não há propostas de currículos de competências de medicina paliativa (MP) para geriatra no Brasil. Diante disso, objetivou-se desenvolver uma matriz de competências de medicina paliativa para o geriatra (MCMPG), especialmente para aquele em formação. MÉTODO: A primeirafase consistiu na elaboração da matriz piloto. Para se determinar o consenso, um grupo de geriatras com certificação de área de atuação em MP de todas as regiões do país foi convidado a opinar sobre as competências elencadas na matriz piloto. Foram duas etapas (2ª e 3ª fases) de metodologia Delphi modificada para se obter o consenso (nível de concordância maior que 50 e 80%, respectivamente, na 2ª e 3ª fases). E, por fim, realizada a fase de consulta pública no XXI Congresso Brasileiro de Geriatria e Gerontologia e via site da Academia Nacional de Cuidados Paliativos. RESULTADOS: Dezenove experts em MP e Geriatria avaliaram a MCMPG. O nível de concordância de todas as áreas temáticas foi maior que o determinado, exceto a sedação paliativa (20% discordância). A MCMPG finalizou com 13 áreas temáticas, 105 competências, sendo 11 de pré­requisitos, 52 essenciais, 24 desejáveis e 18 avançadas. CONCLUSÃO: Definiu-se uma matriz de competências de CPs que pode ser integrada à educação médica, especificamente à pós-graduação em Geriatria. Propõe-se que os serviços de residência em Geriatria ofereçam, pelo menos, o treinamento das competências "essenciais", nas áreas temáticas propostas fortalecendo a educação em CPs de forma homogênea em todo o país.

INTRODUCTION AND OBJECTIVE: Despite a great interface between palliative care (PC) and geriatrics, there are currently no curriculum proposals of palliative medicine (PM) competencies for geriatricians in Brazil. Thus, the aim was to develop a competency framework of palliative medicine for geriatricians (CFPMG), especially for those under training. METHOD: The first phase consisted of preparing a pilot framework. To reach a consensus, geriatricians with expertise in the field of PM from all Brazilian regions were invited to express their opinions on the competencies listed in the pilot framework. A modified Delphi method was used in the 2nd and 3rd phases to obtain a consensus (level of agreement greater than 50% and 80%, respectively). Finally, a public consultation phase was conducted in the 21st Brazilian Congress on Geriatrics and Gerontology, and via Brazilian National Academy of Palliative Care website. RESULTS: Nineteen experts in PM and geriatrics evaluated the CFPMG. The level of agreement in all thematic areas was greater than that required, except for palliative sedation (20% of disagreement). The CFPMG concluded with 13 thematic areas and 105 competencies, including 11 prerequisite, 52 core, 24 desirable, and 18 advanced competencies. CONCLUSION: The defined competency framework of PC may be integrated into medical education, specifically into geriatric medicine training. Our suggestion is that residency programs in geriatrics provide training at least in the core competencies from the proposed thematic areas, thereby strengthening PC education homogeneously across the country.

La atención al final de la vida: deliberando sobre hechos y valores / End of life care: deliberating on facts and values

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Pediatric palliative oncology: the state of the science and art of caring for children with cancer.

PURPOSE OF REVIEW: Pediatric palliative oncology (PPO) is an emerging field that integrates the principles of palliative care early into the illness trajectory of children with cancer. PPO providers work with interdisciplinary clinicians to provide optimal medical and psychosocial care to children with cancer and their families. Ongoing advances in the field of pediatric oncology, including new treatment options for progressive cancers, necessitate the early integration of palliative care tenets including holistic care, high-quality communication, and assessment and management of refractory symptoms. RECENT FINDINGS: Research in this emerging field has expanded dramatically over the past several years. This review will focus on advancements within several key areas of the field, specifically regarding investigation of the communication needs and preferences of patients and families, exploration of educational initiatives and interventions to teach PPO principles to clinicians, study of patient-reported and parent-reported tools to better assess and manage refractory symptoms, and development of novel models to integrate palliative care within pediatric oncology. SUMMARY: Research findings in the field of PPO, concurrent with advances in the treatment of pediatric cancer, may help improve survival and quality of life for children with cancer.

Investigación cualitativa en Cuidados Paliativos. Un recorrido por los enfoques más habituales / Qualitative research in palliative care. A walk through the most frequent approaches

La utilización de la investigación cualitativa en Cuidados Paliativos (CP) está en auge, quizás porque tienen muchos aspectos en común. Ambos se centran en la persona y su entorno y están especialmente interesados en la experiencia humana. El objetivo de este artículo es presentar algunos de los enfoques más frecuentemente utilizados en las ciencias de la salud, proporcionando ejemplos de estudios de CP. Esto con el fin de ayudar a quienes se están iniciando en la investigación cualitativa a explorar los posibles enfoques que podrían utilizar para realizar investigación en CP. A través del ejercicio «armchair walkthrough», se concretan los aspectos clave de un proyecto de investigación, considerando los distintos enfoques: la etnografía, la fenomenología, la narrativa y la teoría fundamentada. Familiarizarse con la metodología cualitativa y algunos de los enfoques ayudará a los profesionales de CP a plantear nuevas preguntas y retos con investigación rigurosa

The use of qualitative research in Palliative Care (PC) is increasing, probably because PC and qualitative methodology have many things in common. Both focus on the person and his or her environment, and they are particularly interested in human experience. The aim of this paper is to present some of the most often used qualitative research approaches in health science, providing examples of PC studies. The aim is to help beginners to explore the possible approaches that they could use to carry out research in PC. The armchair walk-through exercise, which helps to specify key aspects in research, is developed for each of the approaches: ethnography, phenomenology, personal narrative, and grounded theory. Becoming familiar with qualitative methodology and some of the approaches will help PC health professionals to raise new questions and address new challenges with rigorous research

Palliative medicines for children - a new frontier in paediatric research.

OBJECTIVES: This paper seeks to highlight from a UK perspective the current lack of a research evidence base in paediatric palliative care that has resulted in a paucity of available medicines with appropriate formulations (strength and dosage form) to provide symptom management for children with life-limiting illnesses and to raise awareness of this group of 'therapeutic orphans'. Currently, clinicians have limited, often unsuitable medication choices for their paediatric palliative care patients, with little hope of moving away from the status quo. KEY FINDINGS: Most medicines used in children receiving palliative care are old and off-patent drugs, developed for and tested in an adult population. Many are not available in suitable formulations (dosage form and strength) for administration to children, and there are often no age-related profiles of adverse drug reactions or for safe dosing. SUMMARY: Existing regional paediatric palliative care networks and support organisations should lobby funding bodies and the academic community to support appropriate research for this group of therapeutic orphans. Support must also be provided to pharmaceutical companies in the development of suitable products with appropriate formulations.

Deactivation of Left Ventricular Assist Devices: Differing Perspectives of Cardiology and Hospice/Palliative Medicine Clinicians.

BACKGROUND: Beliefs around deactivation of a left ventricular assist device (LVAD) vary substantially among clinicians, institutions, and patients. Therefore, we sought to understand perspectives regarding LVAD deactivation among cardiology and hospice/palliative medicine (HPM) clinicians. METHODS AND RESULTS: We administered a 41-item survey via electronic mail to members of 3 cardiology and 1 HPM professional societies. A convergent parallel mixed-methods design was used. From October through November 2011, 7168 individuals were sent the survey and 440 responded. Three domains emerged: (1) LVAD as a life-sustaining therapy; (2) complexities of the process of LVAD deactivation; and (3) legal and ethical considerations of LVAD deactivation. Most respondents (cardiology 92%; HPM 81%; P = .15) believed that an LVAD is a life-sustaining treatment for patients with advanced heart failure; however, 60% of cardiology vs 2% of HPM clinicians believed a patient should be imminently dying to deactivate an LVAD (P < .001). Additionally, 87% of cardiology vs 100% of HPM clinicians believed the cause of death following LVAD deactivation was from underlying disease (P < .001), with 13% of cardiology clinicians considering it to be a form of euthanasia or physician-assisted suicide. CONCLUSION: Cardiology and HPM clinicians have differing perspectives regarding LVAD deactivation. Bridging the gaps and engaging in dialog between these 2 specialties is a critical first step in creating a more cohesive approach to care for LVAD patients.

Cuidados paliativos: vida al final de la vida / Palliative care: Life to the end of life

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Exploring the interface between 'physician-assisted death' and palliative care: cross-sectional data from Australasian palliative care specialists.

BACKGROUND: Legalisation of physician-assisted dying (PAD) remains a highly contested issue. In the Australasian context, the opinion and perspective of palliative care specialists have not been captured empirically, and are required to inform better the debate around this issue, moving forward. AIM: To identify current attitudes and experiences of palliative care specialists in Australasia regarding requests for physician-assisted suicide and voluntary euthanasia, and to capture the opinion of palliative care specialists on the legalisation of these practices in the Australasian context. METHOD: An anonymous, cross-sectional, online survey of Australasian specialists in palliative care, addressing the following six areas: (i) demographics; (ii) frequency of requests, and response given; (iii) understanding of the term 'voluntary euthanasia'; (iv) opinion regarding legalisation of physician-assisted suicide and voluntary euthanasia in Australasia, and willingness to participate if legal; (v) identification of the most important values guiding this opinion; and (vi) anticipated impact that legalisation of assisted death would have on palliative care practice. RESULTS: Important findings include: (i) palliative care specialists are largely opposed to the legalisation of PAD; (ii) the proportional titration of opioids is not understood by any palliative care specialist studied to be 'voluntary euthanasia'; and (iii) there is a wide variation in frequency of requests, and one-third of palliative care specialists express discomfort in dealing with requests for assisted suicide or euthanasia. CONCLUSION: Key areas for future research at the interface between PAD and best practice end-of-life care are identified, including exploration into why palliative care specialists are largely opposed to PAD, and consideration of the impact 'the opioid misconception' may have on the literature informing this debate.

Evidence-Based Palliative Care 13 Years On: Has anything changed?

There is a paucity of data on whether interventions in individual palliative care units are evidence-based. Thirteen years ago an initial study evaluated the evidence base of interventions in palliative care. Using similar methodology in the present study, we evaluated the evidence for interventions performed in an inpatient palliative care setting, looking at level of evidence as well as quality and outcome of evidence. More than half of all the interventions (47 interventions, 59 percent) we looked at in a Brisbane, Australia, inpatient palliative care setting were based on a high level of evidence in the form of systematic reviews of randomized controlled trials (level I or level II). There were only a few interventions (10 percent) for which no evidence could be retrieved. Our results show that the evidence base for interventions in palliative care continues to evolve, but that there are still areas for which further high-quality studies are needed.