The gift of here and now at the end of life: Mindful living and dignified dying among Asian terminally ill patients.

OBJECTIVES: In Chochinov's dignity model, living in the here and now (mindful living) is explicitly stated as a dignity-conserving practice. However, what facilitates mindful living remain unclear. This study aims to investigate the mechanisms of mindful living among Asian terminally ill patients. METHODS: This interpretative phenomenological analysis comprised patients aged 50 and above with a prognosis of less than 12 months. Fifty interview transcripts from a larger Family Dignity Intervention study conducted in Singapore were used for the analysis. RESULTS: Findings revealed 12 themes that were organized into 3 axioms of mindful living for dignified dying: (a) purposive self-awareness, (b) family-centered attention, and (c) attitudes of mortality acceptance. Through purposive self-awareness, patients introspected their lived experience with illness and anticipated death to find resilience and contentment. Patients' conscious family-centered attention revolved around their relationships, achievements, and legacy within the family, leading to a deepened sense of interconnectedness with self and beloved others at life's end. Lastly, patients adopted nonjudgmental attitudes of mortality acceptance as they made necessary arrangements in preparation for their death, allowing them to treasure every living moment and obtain a closure in life. An empirical model of mindful living for dignified dying was developed based on these emerging themes, illustrating the interweaving of intention, attention, and attitude for facilitating meaningful living in the face of mortality. SIGNIFICANCE OF RESULTS: Mindful living is a dignity-preserving practice, which helps terminally ill patients to find tranquility in each present moment despite their impending death. The identified mechanisms of mindful living lay important groundwork for a new understanding and possible directions for culture-specific, mindfulness-based, family-centered interventions suited to terminally ill patients in the Asian context.

Acceptance and Commitment Therapy (ACT) for people with advanced progressive illness, their caregivers and staff involved in their care: A scoping review.

BACKGROUND: People with an advanced progressive illness and their caregivers frequently experience anxiety, uncertainty and anticipatory grief. Traditional approaches to address psychological concerns aim to modify dysfunctional thinking; however, this is limited in palliative care, as often concerns area valid and thought modification is unrealistic. Acceptance and Commitment Therapy is a mindfulness-based behavioural therapy aimed at promoting acceptance and valued living even in difficult circumstances. Evidence on its value in palliative care is emerging. AIMS: To scope the evidence regarding Acceptance and Commitment Therapy for people with advanced progressive illness, their caregivers and staff involved in their care. DESIGN: Systematic scoping review using four databases (Medline, PsychInfo, CINAHL and AMED), with relevant MeSH terms and keywords from January 1999 to May 2023. RESULTS: 1,373 papers were identified and 26 were eligible for inclusion. These involved people with advanced progressive illness (n = 14), informal caregivers (n = 4), palliative care staff (n = 3), bereaved carers (n = 3), and mixed groups (n = 2). Intervention studies (n = 15) showed that Acceptance and Commitment Therapy is acceptable and may have positive effects on anxiety, depression, distress, and sleep in palliative care populations. Observational studies (n = 11) revealed positive relationships between acceptance and adjustment to loss and physical function. CONCLUSION: Acceptance and Commitment Therapy is acceptable and feasible in palliative care, and may improve anxiety, depression, and distress. Full scale mixed-method evaluation studies are now needed to demonstrate effectiveness and cost-effectiveness amongst patients; while further intervention development and feasibility studies are warranted to explore its value for bereaved carers and staff.

Aspectos bioéticos relacionados aos cuidados de fim de vida: uma revisão integrativa

esta é uma revisão integrativa da literatura que tem como objetivo ressaltar e discutir os aspectos bioéticos relacionados com a atenção ao paciente no final da vida no contexto brasileiro. Em específico, pretende-se identificar as circunstâncias relacionadas com esses aspectos bioéticos, bem como seus fatores desencadeantes. Foram selecionadas publicações de autores brasileiros, publicadas entre 2014 e 2020. A busca foi realizada em outubro de 2020, por meio das bases de dados eletrônicas PubMed e SciELO. Dos 231 artigos encontrados, 24 foram selecionados. Da análise temática, surgiram duas categorias que compreendem os aspectos bioéticos: "(não) morrer com dignidade" e "obstinação e futilidade terapêuticas". Foram identificadas seis circunstâncias relacionadas com esses aspectos bioéticos e 15 fatores desencadeantes. Os aspectos foram associados principalmente à não aceitação da morte, às falhas na formação acadêmica dos profissionais de saúde e ao insuficiente conhecimento sobre os conceitos e práticas em cuidados paliativos. Portanto, integrar o ensino da bioética na formação e na prática profissionais se torna fundamental para o cuidado dos pacientes no final da vida.

this integrative review of the literature aims to highlight and discuss the bioethical aspects of end-of-life patient care in the Brazilian context. Specifically, it seeks to identify the circumstances related to these bioethical aspects and their triggering factors. Publications by Brazilian authors published between 2014 and 2020 were selected. The search was conducted in October 2020 through PubMed and SciELO electronic databases. Of the 231 articles found, 24 were selected. Two categories comprising bioethical aspects emerged from the thematic analysis: "(not) dying with dignity" and "therapeutic obstinacy and futility." Six circumstances related to these bioethical aspects and 15 triggering factors were identified. The aspects were mainly associated with the non-acceptance of death, failures in the academic training of health professionals, and insufficient knowledge about palliative care concepts and practices. Therefore, integrating bioethics teaching in professional training and practice becomes fundamental for the care of patients at the end of life.

esta es una revisión integradora de la literatura que tiene como objetivo resaltar y discutir los aspectos bioéticos relacionados con la atención al paciente al final de la vida en el contexto brasileño. Específicamente, busca identificar las circunstancias relacionadas con estos aspectos bioéticos, así como sus factores desencadenantes. Se seleccionaron publicaciones de autores brasileños, publicadas entre 2014y 2020. La búsqueda se realizó en octubre de 2020, a través de las bases de datos electrónicas PubMed y SciELO. De los 231 artículos encontrados, 24 fueron seleccionados. Del análisis temático surgieron dos categorías que comprenden los aspectos bioéticos: "(no) morir con dignidad" y "obstinación y futilidad terapéuticas". Se identificaron seis circunstancias relacionadas con estos aspectos bioéticos y 15 factores desencadenantes. Los aspectos se asociaron principalmente a la no aceptación de la muerte, las fallas en la formación académica de los profesionales de salud y el insuficiente conocimiento sobre los conceptos y prácticas en cuidados paliativos. Por lo tanto, integrar la enseñanza de la Bioética en la formación y práctica profesionales se vuelve fundamental para el cuidado de los pacientes al final de la vida.

Terminally ill patients' and their relatives' experiences and behaviors regarding complementary and alternative medicine utilization in hospice palliative inpatient care units: a cross-sectional, multicenter survey.

BACKGROUND: Terminally ill patients often experience exacerbations of diseases that render mainstream medicine ineffective in relieving symptoms, prompting attempts at complementary and alternative medicine (CAM). This study collected data from terminally ill patients and their relatives to determine differences between CAM use, behavioral patterns, and perceptions of health information about CAM. METHODS: A cross-sectional design using a self-administered questionnaire was adopted. Eight medical institutions in Taiwan with inpatient hospice palliative care units were chosen. Ninety-two terminally ill patients and 267 relatives met the inclusion criteria. The questions concerned the experience of CAM use, the kinds of products/services CAM provided, the purpose of CAM use, the source of CAM information, and the perceptions and attitudes toward CAM. RESULTS: Both terminally ill patients and their relatives have a high proportion of lifetime and one-year prevalence of CAM use (88.0% vs. 88.4%; p = 0.929). CAM use for musculoskeletal and neurological discomfort is higher among terminally ill patients than among their relatives. Relatives/friends are the most frequent sources of information on CAM (53.3% vs. 62.2%; p = 0.133). The percentage of terminally ill patients who discontinued mainstream medical treatment because of CAM use was higher than that of their relatives (18.5% vs. 9.3%; p = 0.026). More than half the terminally ill patients and their relatives had never been asked about CAM by medical staff (64.1% vs. 66.7%), nor had they informed medical professionals about the use of CAM products and services (63% vs. 66.9%). Random inquiries by medical professionals may be associated with increased disclosure of CAM use (terminally ill patients: odds ratio, 9.75; 95% confidence interval, 1.97-48.35 vs. relatives: odds ratio, 5.61; 95% confidence interval, 2.66-11.83). CONCLUSIONS: The high prevalence and concealment of CAM use in terminally ill patients should be considered. Medical professionals should establish a friendly and barrier-free communication model, encourage patients to share CAM experiences, and provide evidence-based information on the use of CAM products and services, to reduce the potential damage caused by harmful use.

Explaining health care providers' perceptions about the integration of palliative care with primary health care; a qualitative study.

BACKGROUND: Easy access to palliative care is one of the basic needs of cancer patients, and this can be achieved by providing such services at the community level. One approach to provide community-based palliative care is to integrate it with primary health care (PHC). Considering the antiquity and extension of the PHC system in Iran and the importance of being aware of stakeholders' views in order to integrate a palliative care provision model into a country's health care system, we aimed to explain health care providers' perception of the integration of palliative care with PHC. METHODS: The present qualitative research was conducted using the conventional content analysis method in Iran from October 2016 to July 2020. The participants of the study included the stakeholders involved in providing palliative care to cancer patients, as well as PHC system experts. The participants were selected purposefully using the snowball sampling method. Data were collected through holding 21 semi-structured interviews and one focused group session and analyzed based on the method proposed by Lundman and Graneheim. RESULTS: Qualitative data analysis revealed three main categories and ten subcategories. The main categories included the health system's structure as an opportunity (with the subcategories of employing the network system for providing health services, establishment of a referral system, and establishment of the family physician program and manpower diversity), requirements (with the subcategories of the position of home care centers and their relationship with PHC, opioid use management, equipment management, financial support, and legal issues), and outcomes (with the subcategories of facilitated access to services and good death). CONCLUSION: Iran's health system possesses adequate infrastructure for providing palliative care to cancer patients within the context of PHC. Beside available opportunities, there are also problems that need to be resolved so that families can meet their patients' care needs and provide them with an easy death by having access to home-based palliative care.

Communicating with young children who have a parent dying of a life-limiting illness: a qualitative systematic review of the experiences and impact on healthcare, social and spiritual care professionals.

BACKGROUND: Healthcare professionals play a key role in interacting with children who have a parent with a life-limiting illness. While playing such a role can be challenging, not much is known about how such interactions impact these professionals and affect their ability to render support. METHODS: Four databases were searched with the intention to conduct a qualitative systematic review. Articles were selected based on pre-determined inclusion and exclusion criteria. Their quality was assessed using the tool "Standard Quality Assessment Criteria for Evaluating Primary Research Papers from a Variety of Fields". Findings were analysed using thematic analysis techniques outlined by Thomas and Harden as well as Sandelowski and Barroso. Review was registered with the Review Registry database. RESULTS: Three themes emerged - healthcare professionals' discomfort; their assumptions and actions; and potentiating workplace factors. The discomfort had several dimensions: fear of making a situation worse, concern of not being able to cope with emotionally charged situations, and internal conflict that arose when their values clashed with family dynamics. CONCLUSION: Healthcare professionals' sense of discomfort was very pronounced. This discomfort, together with their assumptions, could impact their ability to support children. The organisation played an important role, which was reflected in the work culture, workflow and ability to collaborate with other agencies involved in supporting children. The discomfort was mitigated by having more professional experience, workplace support systems and training on communicating with children. It was apparent that the individual professional did not work alone when supporting children but alongside others within an organisation. As such, issues raised in this review will benefit from multi-faceted solutions.

Shades of hope: Marcel's notion of hope in end-of-life care.

This article examines the compatibility and relevance of Gabriel Marcel's phenomenology of hope in interdisciplinary research on the role of hope in end-of-life (EOL) care. Our analysis is divided into three thematic topics which examine the various shades of hope observed in Marcel's phenomenology of hope and in the collection of 20 EOL studies on hope as experienced by adult palliative care (PC) patients, health care professionals (HCP) and parents of terminally ill children. The three topics defining the shades of hope are: the meaning of hope in its dynamic aspects, the dialectics of hope and despair, and the transcendent facets of hope. We analyse how Marcel's understanding of hope is reflected in EOL studies, and how this perception can enrich the philosophy of PC and significantly deepen and broaden HCPs' understanding of hope. Our findings prove that despite terminological differences between Marcelian phenomenology and the concepts of hope in the 20 EOL studies, hope emerges as a resourceful movement towards being. Implementing Marcelian hope within communication in EOL care could help in HCPs' interpersonal approach to patients as his concept harbors a holistic perception of the existential situation of a person. Equally, introducing Marcel's phenomenology of hope into the clinical encounter could play a beneficial role in improving the ability of patients to adapt to the difficult conditions of their disease and PC treatment.

Spirituality among the Terminally Ill in a Rural Hospice Program.

Rural populations are unique compared to their urban and suburban counterparts in relation to both healthcare mindsets and spiritual needs. Rural populations tend to be more religious, more accepting of death, and less likely to pursue aggressive care at the end-of-life. This research project looked at the utilization of chaplaincy services among a rural, southwestern hospice population. It also examined outcomes related to patient and family satisfaction surrounding spiritual themes. Results were compared to 1700 other hospice programs. Areas where there were significant statistical differences from benchmarks were highlighted. It appears that overall hospice satisfaction and assistance with feelings of sadness and anxiety could be related to increased spiritual utilization.

How to measure the effects and potential adverse events of palliative sedation? An integrative review.

BACKGROUND: Palliative sedation is the monitored use of medications intended to relieve refractory suffering. The assessment of palliative sedation has been focused on the assess of the level of consciousness but a more comprehensive approach to assessment is needed. AIM: To understand how the potential effects and possible adverse events of palliative sedation in Palliative Care patients are measured. DESIGN: Integrative review of most recent empirical research. DATA SOURCES: Cochrane Library, Embase, Medline, PubMed, and CINAHL were searched (2010-2020) using the terms sedation, palliative care, terminal care, assessment. Limits included studies in English and adults. Inclusion criteria were: scientific assessment papers, effects and complications of palliative sedation; patients with incurable illness. RESULTS: Out of 588 titles, 26 fulfilled inclusion criteria. The Discomfort Scale-Dementia of Alzheimer Type and Patient Comfort Score were used to assess comfort. The Richmond Agitation-Sedation Scale and The Ramsay Sedation Scale are the most used to measure its effect. Refractory symptoms were assessed through multi-symptom or specific scales; except for psychological or existential distress. Delirium was assessed using the Memorial Delirium Assessment Scale and pain through the Critical Care Pain Observation Tool. The use of technical approaches to monitor effects is upcoming. There is lack of measurement of possible adverse events and variability in timing measurement. CONCLUSIONS: There are palliative care validated instruments to assess the sedation effect but this review shows the need for a more standardized approach when assessing it. Instruments should be used within an experienced and trained expert, providing a holistic assessment.

Oral health problems among palliative and terminally ill patients: an integrated systematic review.

BACKGROUND: High incidence of treatable oral conditions has been reported among palliative patients. However, a large proportion of palliative patients lose their ability to communicate their sufferings. Therefore, it may lead to under-reporting of oral conditions among these patients. This review systematically synthesized the published evidence on the presence of oral conditions among palliative patients, the impact, management, and challenges in treating these conditions. METHODS: An integrative review was undertaken with defined search strategy from five databases and manual search through key journals and reference list. Studies which focused on oral conditions of palliative patients and published between years 2000 to 2017 were included. RESULTS: Xerostomia, oral candidiasis and dysphagia were the three most common oral conditions among palliative patients, followed by mucositis, orofacial pain, taste change and ulceration. We also found social and functional impact of having certain oral conditions among these patients. In terms of management, complementary therapies such as acupuncture has been used but not well explored. The lack of knowledge among healthcare providers also posed as a challenge in treating oral conditions among palliative patients. CONCLUSIONS: This review is first in its kind to systematically synthesize the published evidence regarding the impact, management and challenges in managing oral conditions among palliative patients. Although there is still lack of study investigating palliative oral care among specific group of patients such as patients with dementia, geriatric or pediatric advanced cancer patients, this review has however provided baseline knowledge that may guide health care professionals in palliative settings.

The impact of attachment security on death preparation in advanced cancer: The role of couple communication.

OBJECTIVE: Attachment security protects psychological well-being in patients with advanced cancer, but its effect on death preparation in this population has not been demonstrated. We examined the relationship of attachment security to death preparation in advanced cancer and tested whether couple communication mediates this relationship and whether gender and age moderate this mediating effect, using longitudinal data from a psychotherapy trial. METHODS: Patients with advanced cancer who lived with a partner (Nbaseline = 289) completed measures of attachment security (attachment avoidance, attachment anxiety), couple communication, and death preparation (preparation for end of life, life completion) and attendant health involvement (relationship with healthcare provider). A moderated mediation model was evaluated at each time period (baseline, 3 months, and 6 months). RESULTS: Couple communication mediated the relationship of attachment security to preparation for end of life and life completion (b's = -.06 to -.10). Anxiety × Gender effects on baseline couple communication (P's = .016) indicated that women with greater attachment anxiety reported worse communication than their male counterparts. Couple-communication × Gender × Age effects on baseline preparation for end of life (P = .007-.020) suggested that women showed better preparation with better couple communication. Younger patients reported less preparation than older patients, especially with poorer communication, but their preparation increased with better communication, especially in younger men. CONCLUSIONS: Attachment security supports death preparation in advanced cancer partly through better couple communication. Couple-based psychotherapeutic interventions, especially for younger individuals and women with attachment anxiety, may facilitate constructive conversations and death preparation.

Reflections on the Terminality of Life with Undergraduate Medical Students / Reflexões sobre a Terminalidade da Vida com Acadêmicos de Medicina

Abstract: Introduction: Death and dying are daily relevant themes for health care professionals and medical students. Nonetheless, since their first years of graduation, students are contrived to supplant the holistic conception of human beings and life in favor of enhancing the technical aspects of the medical profession. Methods: Therefore, in face of the few opportunities to enquire about these future professionals' feelings and comprehensions toward life terminality, we pursued their perceptions through the application of a semi-structured questionnaire. Ten students from each year of the medical course at UNIVAS were interviewed, encompassing 60 scholars. Students should be regularly enrolled in the medical course, as well as give their consent, by signing the Consent Term, to participate in the study. The interviews took place at the institution and the material containing students' responses was fully destroyed afterwards. Their responses were analyzed based on the Discourse of the Collective Subject Method. Results: The idea of terminality being properly the "end of life" was paramount among the years, situation with which a great amount of the scholars (58%) admitted not being prepared to deal with, due to the lack of reflections about death, its psychological aspects and repercussions in the academic context. Interestingly, about 16% of the scholars considered themselves prepared to deal with someone's death, although they were not prepared to intervene in the actual process. This is reinforced by the fact that students must deal with the real scenario of giving undesirable news without previously being prepared to do so, by means of reflecting upon a hypothetical related to the "life-death binomial". Conclusion: Thus, it seems necessary to create spaces in the curriculum that yield not only theoretical-practical but also affective support in situations related to terminality. The proposal of a theoretical-practical education based on palliative care amid the learning programs would shape confident attitudes of future health care professionals towards care.

Resumo Introdução: A morte e o morrer são temas pertinentes ao cotidiano de profissionais de saúde e ao processo de aprendizagem de acadêmicos de Medicina; entretanto, desde os primeiros anos da graduação, o estudante é obrigado a suplantar a concepção holística do ser humano e da vida em prol da supervalorização dos fundamentos técnico-científicos da profissão. Métodos: Nesse sentido, diante das poucas oportunidades de questionar os sentimentos e a compreensão desses futuros profissionais com relação à terminalidade da vida, buscou-se conhecer suas percepções por meio da aplicação de um questionário semiestruturado. Foram entrevistados dez acadêmicos de cada ano do curso de Medicina da Univás, totalizando 60 alunos. Para inclusão no estudo, os estudantes deveriam estar regularmente matriculados no curso, aceitando, por livre-arbítrio, participar da pesquisa por meio da assinatura do Termo de Consentimento Livre e Esclarecido (TCLE). As entrevistas foram gravadas nas dependências da instituição e o material contendo a fala dos participantes foi posteriormente descartado. Para análise das respostas, utilizou-se o método do Discurso do Sujeito Coletivo. Resultados: Foi suscitada, de maneira preponderante em todos os anos, a concepção de terminalidade como sendo propriamente o "fim da vida", situação com a qual parcela considerável dos entrevistados (58%) dizia não se sentir preparada para lidar por conta da escassez de reflexões sobre a morte, seus aspectos psicológicos e suas repercussões no contexto médico-acadêmico. Curiosamente, cerca de 16% dos acadêmicos consideravam-se preparados para vivenciar a morte de alguém, mas não para serem intervencionistas no processo; isso é sustentado pelo fato de que os estudantes têm de lidar com o cenário real de transmissão de más notícias, sem antes passar por situações hipotéticas e reflexivas envolvendo o "binômio vida e morte". Conclusão: Sendo assim, parece necessária a criação de espaços na grade curricular que forneçam apoio não apenas teórico-prático, mas também afetivo das questões envolvendo a terminalidade. A proposta de educação teórico-prática relativa aos cuidados paliativos inserida na grade curricular lapidaria a confiança e atitude dos futuros profissionais perante o cuidado.

Reflexões bioéticas sobre finitude da vida, cuidados paliativos e fisioterapia / Bioethical reflections about the finitude of life, palliative care and physical therapy / Reflexiones bioéticas acerca de la finitud de la vida, los cuidados paliativos y la fisioterapia

Resumo Nas últimas décadas, a evolução tecnológica e científica na área da saúde tem melhorado a expectativa de vida, propiciando maior longevidade e gerando outra percepção a respeito da morte. Engajada nesta nova perspectiva, a bioética propõe reflexão sobre o fim da vida orientando o olhar dos profissionais de saúde para os cuidados paliativos, a humanização e o princípio da dignidade humana. Nesse contexto, a fisioterapia está cada vez mais presente nas discussões atuais sobre cuidados médicos no fim da vida, embora o tema ainda necessite de maior aprofundamento.

Abstract The significant evolution in healthcare in the last decades has improved life expectancy, providing the opportunity to live longer and generating a new perception about death. Committed to this new perspective, bioethics proposes a reflection about the end of life, directing the attention of health professionals to palliative care, the practice of humanization and the principle of human dignity. Physical therapy is incresingly presente in the core of current discussions about health care facing the finitude of life, although the issue still needs further elaboration.

Resumen En las últimas décadas la evolución tecnológica y científica en el área de la salud ha mejorado la expectativa de vida, propiciando una mayor longevidad y generando otra percepción respecto de la muerte. Comprometida con esta nueva perspectiva, la bioética propone una reflexión sobre el fin de la vida dirigiendo la mirada de los profesionales de la salud hacia los cuidados paliativos, la humanización y el principio de la dignidad humana. En este contexto, la fisioterapia está cada vez más presente en las discusiones actuales sobre cuidados médicos en el fin de la vida, aunque el tema necesite aún una mayor profundización.

Revisión sistemática para el abordaje de síntomas desagradables gastrointestinales en cuidados paliativos / Systematic review for addressing uncomfortable gastrointestinal symptoms in palliative care / Revisão sistemática para a abordagem dos sintomas gastrointestinais desagradáveis em cuidados paliativos

Resumen Introducción Este artículo de revisión sistemática pretende examinar en detalle la evidencia cientifica para el abordaje desde la enfermería, en el manejo de síntomas desagradables, gastrointestinales tales como: síndrome anorexia caquexia, disfagia, náuseas y vómito enfocado al cuidado paliativo, basados en el referente teórico del modelo revisado del manejo de síntomas de Marylin J. Dodd. Materiales y Métodos La estrategia que se realizó fue la del sistema PICO, metodológicamente se estableció una pregunta la cual se contesta con la selección de los artículos que se realizó, continuando con la revisión sistemática se aplica la declaración (PRISMA), la investigación de los artículos fue realizada en las bases de datos Medline, Cochrane Library, Scopus, Pubmed, Dialnet, Ebscohost, ProQuest y Elsevier. Dentro de los criterios de inclusión, se tuvo en cuenta principalmente los artículos que fomentan el manejo de los síntomas gastrointestinales en cuidado paliativo. Resultados A pesar de que se evidencia los avances en conocimiento, se identifica que son insuficientes los estudios en este campo, mostrando la necesidad y la obligación de desarrollar el manejo y control de los síntomas desagradables gastrointestinales, el manejo del síntoma debe ser basado en: la experiencia del síntoma desde la percepción, evaluación y respuesta. Discusión La evidencia muestra las diferentes maneras de abordar los síntomas desagradables gastrointestinales, con una mirada holística, en constante movimiento, resaltando que se debe intervenir, desde la dimensión espiritual, física y social. Conclusiones La intención es contribuir con evidencia científica para abordar los síntomas desagradables gastrointestinales.

Abstract Introduction This systematic review article aims to examine in detail the scientific evidence from a nursing perspective in the management of uncomfortable gastrointestinal symptoms such as anorexia-cachexia syndrome, dysphagia, nausea and vomiting, focused on palliative care and based on the theoretical reference of the Revised Symptom Management Model of Marylin J. Dodd. Materials and Methods PICO strategy was used. Methodologically, a question was posed whose answer was provided in the selection of the articles made. Following the systematic review, the PRISMA statement was applied. Article research was conducted through Medline, Cochrane Library, Scopus, PubMed, Dialnet, EBSCOhost, ProQuest and Elsevier databases. As inclusion criteria, articles promoting the management of gastrointestinal in palliative care were mainly considered. Results Although advances in knowledge are evident, it was identified that field-related studies are insufficient, showing the need and the obligation to work on the management and control of uncomfortable gastrointestinal symptoms. Symptoms management should be based on the experience of symptoms from its perception, evaluation and response. Discussion The evidence indicates the different ways of addressing uncomfortable gastrointestinal symptoms under an ever-changing holistic view, emphasizing that it is necessary to intervene from spiritual, physical and social dimensions. Conclusions The purpose is to contribute by means of scientific evidence to addressing uncomfortable gastrointestinal symptoms.

Resumo Introdução Este artigo de revisão sistemática objetiva examinar detalhadamente a evidência científica para a abordagem sob a perspectiva da enfermagem do manejo de sintomas gastrointestinais desagradáveis como: síndrome anoréxico, caquexia, disfagia, náuseas e vómitos com foco no cuidado paliativo, baseados no referente teórico do modelo de manejo de sintomas de Marylin J. Dodd. Materiais e Métodos A estratégia utilizada foi aquela do sistema PICO, metodologicamente foi estabelecida uma pergunta que foi respondida a partir da seleção dos artigos que foi realizada, continuando com a revisão sistemática aplicou-se a declaração (PRISMA), a pesquisa dos artigos foi realizada nos bancos de dados Medline, Cochrane Library, Scopus, Pubmed, Dialnet, Ebscohost, ProQuest e Elsevier. Dentro dos critérios de inclusão, foram considerados principalmente os artigos que promovem o manejo dos sintomas gastrointestinais em cuidados paliativos. Resultados Apesar da constatação de avances no conhecimento, verifica-se que os estudos neste campo são insuficientes, o que demonstra a necessidade e a obrigação de desenvolver o manejo e controle dos sintomas gastrointestinais desagradáveis, o manejo do sintoma deve estar baseado: na experiência do sintoma a partir da percepção, avaliação e resposta. Discussão A evidência demonstra as diferentes maneiras de tratar os sintomas gastrointestinais desagradáveis, sob um olhar holístico, em constante movimento, salientando que a intervenção deve ser feita a partir da dimensão espiritual, física e social. Conclusões O trabalho visa contribuir com evidência científica para o manejo dos sintomas gastrointestinais desagradáveis.

The Effectiveness of Music Therapy for Terminally Ill Patients: A Meta-Analysis and Systematic Review.

CONTEXT: The quality of death has increasingly raised concern because of the physical and psychological suffering of patients with advanced disease. Music therapy has been widely used in palliative care; however, its physical and mental effectiveness remains unclear. OBJECTIVE: To assess the effectiveness of music therapy during palliative care in improving physiology and psychology outcomes. METHODS: Randomized controlled trials evaluating music therapy for terminally ill patients were searched and included from inception up to April 25, 2018. The quality of the studies was assessed using the risk of bias tool recommended by the Cochrane Handbook V.5.1.0. RESULTS: In this study, 11 randomized controlled trials (inter-rater agreement, κ = 0.86) involving 969 participants were included. The quality of the included studies ranged from moderate to high. Compared with general palliative care, music therapy can reduce pain (standardized mean difference: -0.44, 95% confidence interval: -0.60 to -0.27, P < 0.00001) and improve the quality of life (standardized mean difference: 0.61, 95% confidence interval: 0.41 to 0.82, P < 0.00001) in terminally ill patients. In addition, anxiety, depression, and emotional function are improved as well. However, no significant differences were found in the patient's physical status, fatigue, and social function. CONCLUSION: This meta-analysis study demonstrated that music therapy served as an effective intervention to alleviate pain and psychological symptoms of terminally ill patients. However, considering the limitation of the quantity of the studies included, these results would need to be further confirmed.

Vivenciando o processo de morte-morrer: uma análise fenomenológica do paciente com câncer em estágio terminal / Experiencing the death-dying process: a phenomenological analysis of patients with terminal cancer

Objetivou-se compreender o sofrimento que emana do processo de terminalidade e suas consequências na vida de quem o vivencia. Pesquisa fenomenológica, embasada no pensar heideggeriano realizada com 11 pacientes com câncer em estágio avançado. Os dados foram obtidos por entrevistas abertas, realizadas no período de novembro de 2015 a março de 2016. Como resultado emergiram duas temáticas: "Enfrentando o processo morte-morrer" e "Desvelando o sofrer pela terminalidade", as quais mostram que é no enfrentamento da morte que cada Ser vivencia de forma única e individualizada seu modo de ser-no-mundo. Concluiu- se que o Ser que vivencia o processo de terminalidade da vida descortina de maneira própria, o seu encontro com o sofrimento e o processo de aceitação e compreensão da sua finitude, o que imputa à enfermagem um olhar crucialmente holístico e individual para que as necessidades de quem experiencia o processo de terminalidade da vida sejam contempladas.

The objective of the present study was to understand the suffering emanating from the terminality process and its consequences in the lives of those who experience it. This is a phenomenological study, based on Heideggerian thought, carried out with 11 patients with advanced cancer. The data were obtained through open interviews, conducted from November 2015 to March 2016. Two themes emerged from the results: "Confronting the death-dying process" and "Revealing the suffering from terminality", both of which demonstrate that it is in the confrontation of death that each Being uniquely experiences their individualized way of being-in-the-world. It was concluded that the Being that experiences the terminality of life process reveals, in their own way, their encounter with suffering and the process of acceptance and comprehension of their finitude. This ascribes a crucially holistic and individual eye to nursing, so that the necessities of those experiencing the terminality of life process are contemplated.

Atuação do nutricionista para melhora da qualidade de vida de pacientes oncológicos em cuidados paliativos / Nutritionist's professional practice to improve quality of life of cancer patients undergoing palliative care

Introdução: O cuidado paliativo é uma das formas de tratamento do câncer avançado que objetiva o controle dos sintomas, conforto e a melhora da qualidade de vida dos pacientes e de seusfamiliares. Como membro da equipe multiprofissional, que atua neste âmbito, está o nutricionista,que exerce papel substancial nesses cuidados. Objetivo: Caracterizar a associação entre a atuaçãodo nutricionista e a qualidade de vida de pacientes oncológicos em cuidados paliativos. Material eMétodos: Foi realizada uma revisão bibliográfica integrativa com base no banco de dados Bireme,PubMed, Web of Science, Scopus e Cinahl e Embase, contemplando artigos publicados no períodode 2012 a 2017. Para composição da estratégia de busca foram utilizadas as palavras-chave:nutricionista; cuidados paliativos e câncer em português e inglês. Resultados: Foram encontrados187 artigos e excluídos 183 trabalhos, após leitura dos títulos, resumos e textos por não fazeremreferência ao tema proposto e aos critérios de inclusão. Foram inseridos um total de quatro estudos,sendo dois artigos da base Bireme, um artigo da base Web of Science e um da PubMed. Conclusão:O profissional nutricionista executa papel primordial nos cuidados paliativos, pois a terapianutricional colabora para a redução dos efeitos colaterais ocasionados pelo tratamento, realizandoorientações nutricionais pertinentes a estes indivíduos, além de fazer relação de vínculo entre aequipe, o paciente e seus familiares no tocante à alimentação, contribuindo assim para a melhora daqualidade de vida destes pacientes

Introduction: Palliative care is an alternative to treat cancer in its advanced stage. Treatment aims to control symptoms, comfort, and improve the quality of life of patients and their families. The nutritionist is a member of the multidisciplinary team who plays a substantial role in this care. Objective: Characterize the association between the nutritionist's professional practice and the quality of life of cancer patients in palliative care. Material and Methods: We conducted an integrative review of published literature from 2012 through 2017. Database searched included PubMed, Web of Science, Scopus, Cinahl, and Embase. The following keywords were used separately and combined in all databases and search engines: search terms, "nutritionist", "palliative care", and "cancer". The search was limited to Portuguese and English languages. Results: The integrative literature search resulted in the identification of 187 articles; of which 183 were excluded. Articles were first screened by review of the title. Selected articles were further screened by review of the abstract. The final chosen articles were read and the desired data summarized. Studies were excluded if they did not specifically record the proposed theme. Four studies were identified, two from Bireme, one from the Web of Science, and one from PubMed searches. Conclusion: Nutritionist's professional practice is primordial in the care of the patient. He/she helps to establish the best therapeutic plan, including nutrition therapy, in order to reduce the anxiety and suffering so peculiar in this approach. He/she also helps to reduce side effects caused by the treatment, making pertinent nutritional orientations/counseling to the individuals. The professional can establish a relationship between the team, the patient, and their families regarding nutrition. Thus, this professional might contribute to the improvement of patents' quality of life.

Quality of life and psychological distress are differentially associated with distinct symptom-functional states in terminally ill cancer patients' last year of life.

OBJECTIVE: Quality of life (QOL) and psychological distress at end of life (EOL) heavily depend on symptom distress and functional impairment, which may not deteriorate synchronously at EOL. METHODS: Using multivariate hierarchical linear modeling, we simultaneously evaluated the differential association of 5 previously identified, worsening conjoint symptom-functional states with QOL, anxiety symptoms, and depressive symptoms over 317 terminally ill cancer patients' last year of life. Quality of life, anxiety symptoms, and depressive symptoms were measured by the McGill Quality of Life Questionnaire and the Hospital Anxiety and Depression Scale, respectively. RESULTS: Quality of life, anxiety symptoms, and depressive symptoms deteriorated significantly more for patients in the 4 worst symptom-functional states (states 2-5) than in the best state (state 1). Quality of life did not differ significantly among patients in states 2 to 5. However, patients in state 4 had significantly lower anxiety-symptom levels than patients in states 2, 3, and 5, whose anxiety-symptom levels did not differ significantly. In contrast, depressive-symptom levels differed significantly between participants in any 2 of the worst symptom-functional states, except between participants in states 3 and 5 as well as between those in states 2 and 4. CONCLUSION: The 5 distinct symptom-functional states contributed to worsening QOL, anxiety symptoms, and depressive symptoms, but each was negatively and uniquely associated with psychological well-being in terminally ill cancer patients' last year of life. CLINICAL IMPLICATIONS: The psychological well-being and QOL of high-risk patients in states 3 and 5 may be improved at EOL by targeting them with appropriate symptom management interventions and facilitating their functioning.

Espiritualidade no cuidado de enfermagem ao paciente oncológico em cuidados paliativos / Spirituality in the nursing care to oncological patient in palliative care

Introdução: o cuidado paliativo pode ser entendido como uma abordagem que auxilia na melhora da qualidade de vida dos pacientes e familiares que enfrentam problemas associados às doenças ameaçadoras da vida. Durante a assistência paliativa, as necessidades atendidas são diversas, porém a espiritualidade pode ser considerada a mais urgente devido à fragilidade que esses pacientes apresentam diante da proximidade da morte e o medo do desconhecido. Objetivo: conhecer a abordagem espiritual realizada nos cuidados pelos profissionais de enfermagem. Método: estudo qualitativo, descritivo e exploratório com oito pacientes atendidos pela equipe de Consultoria em Cuidados Paliativos de um hospital escola do Sul do Brasil. Os participantes foram entrevistados entre os meses de maio e junho de 2017. As entrevistas foram gravadas e transcritas para análise de dados. Resultados: a espiritualidade é apontada pelos pacientes como uma estratégia de enfrentamento da doença. Ainda, considerou-se pelos participantes que a enfermagem, por ser a profissão com maior tempo de permanência junto ao paciente, tem a possibilidade de ofertar o cuidado espiritual, no entanto sua abordagem está focada no modelo biomédico. Conclusão: a espiritualidade é uma forma de estratégia para o enfrentamento da doença e que pode ser ofertada e estimulada nos serviços de saúde. A enfermagem tem potencial para ofertar o cuidado espiritual, mas precisa incluir tal abordagem em sua prática cotidiana, principalmente quando esse cuidado é direcionado a pessoas em cuidados paliativos. Para isso, é preciso preparar os profissionais para um cuidado integral, uma vez que o ser humano é bio-psico-social e espiritual.

Introduction: palliative care can be understood as an approach that assists in improving the quality of life of patients and families facing problems associated with life threatening diseases. During palliative care, the needs met are diverse, but spirituality can be considered the most urgent due to the fragility that these patients present in the face of the near death and the fear of the unknown. Objective: to know the spiritual approach developed in the care by nursing professionals. Method: qualitative, descriptive and exploratory study with eight patients assisted by a team of Consulting in Palliative Care of a school hospital in the south of Brazil. Participants were interviewed between the months of May and June 2017. Interviews were recorded and transcribed for data analysis. Results: spirituality is pointed by patients as a strategy to face the illness. Also, it was considered by participants that nursing, for being the profession with more time with the patient, has the possibility of offering spiritual care, however its approach is focused on the biomedical model. Conclusion: spirituality is a form of strategy to face illness, and it can be offered and stimulated in health services. Nursing has the potential to offer spiritual care, but it needs to include such approach in daily practice, mainly when this care is directed to people in palliative care. For that, it's needed to prepare professionals for a full care, once the human being is biopsycho-social and spiritual.

Investigation of Optimal Time for Starting Betamethasone Using Fatigue Scores and Prognostic Nutritional Index in Terminally Ill Patients With Cancer-Related Fatigue.

BACKGROUND: Corticosteroids are frequently used to treat cancer-related fatigue (CRF), but it is yet to be established as standard care, and few reports have defined the appropriate time to start treatment. OBJECTIVES: We investigated the optimal time for starting betamethasone and evaluated the clinical validity of using the prognostic nutritional index (PNI) for this purpose. METHODS: Data were retrospectively collected for patients with terminal cancer receiving betamethasone for palliative care. Fatigue strength was evaluated by the daily occurrence of fatigue, using proportion of adequate fatigue, AF(%), defined as the average of the daily score for all treatment days, AF(%)all, the initial 5 days, AF(%)initi5, or the last 5 days, AF(%)last5. We examined (1) the relationship between survival time and adequate fatigue for CRF and (2) the correlation between survival time and PNI (based on serum albumin and lymphocytes). RESULTS: Data from 24 patients were included. The AF(%)all was approximately 50% at 42 days before death and gradually decreased as the survival time shortened ( R2 =.41, P <.001). There was a clear positive correlation between AF(%)all and AF(%)initi5 ( R2 =.84, P <.001). At 42 days before death, PNI was approximately 30 and significantly correlated with the survival time ( R2 = .873, P <.001). CONCLUSION: The adequate fatigue appears to be dependent on survival time, and PNI might be useful for identifying patients that will benefit from betamethasone use. It is hoped that these results will contribute to individualized pharmacotherapy of terminally ill patients with CRF.