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PLoS One ; 15(2): e0229176, 2020.
Artigo em Inglês | MEDLINE | ID: mdl-32078660


BACKGROUND: Hospice care has a positive effect on medical costs. The correlation between survival time after receiving hospice care and medical costs has not been previously investigated in the literature on Taiwan. This study aimed to compare the differences in medical costs between traditional care and hospice care among end-of-life patients with cancer. METHODS: Data from Taiwan's National Health Insurance program on all patients who had passed away between 2010 and 2013 were used. Those whose year of death was between 2010 and 2013 were defined as end-of-life patients. The patients were divided into two groups: traditional care and hospice care. We then analyzed the differences in end-of-life medical cost between the two groups. RESULTS: From 2010 to 2013, the proportion of patients receiving hospice care significantly increased from 22.2% to 41.30%. In the hospice group, compared with the traditional group, the proportions of hospital stays over 14 days and deaths in a hospital were significantly higher, but the proportions of outpatient clinic visits; emergency room admissions; intensive care unit admissions; use of ventilator; use of cardiopulmonary resuscitation; and use of hemodialysis, surgery, and chemotherapy were significantly lower. Total medical costs were significantly lower. A greater number of days of survival for end-of-life patients when receiving hospice care results in higher saved medical costs. CONCLUSION: Hospice care can effectively save a large amount of end-of-life medical costs, and more medical costs are saved when patients are referred to hospice care earlier.

Custos de Cuidados de Saúde/estatística & dados numéricos , Cuidados Paliativos na Terminalidade da Vida/economia , Assistência Terminal/economia , Idoso , Feminino , Humanos , Masculino , Estudos Retrospectivos , Doente Terminal/estatística & dados numéricos
Pediatrics ; 145(3)2020 03.
Artigo em Inglês | MEDLINE | ID: mdl-32075871


When parents or guardians hope for a miracle for their child who is critically ill, ethical and professional challenges can arise. Often, although not always, the parent or guardian's hope for a miracle entails a request for continued life-sustaining interventions. Striking a balance between the pediatrician's conception of good medicine and the parent or guardian's authority requires a response that is sensitive, practical, and ethically sound. In this article, we recommend 3 cumulative steps that promote such a response. First, we recommend ways of exploring essential issues through open inquiry, interdisciplinary dialogue, and self-reflection. As part of this exploration, pediatricians will discover that parents or guardians often have unique ideas about what a miracle might be for their child. The second step includes analyzing this diversity and seeking understanding. We classify the hope for a miracle into 3 distinct categories: integrated, seeking, and adaptive. After the pediatrician has categorized the parent or guardian's hope, they can consider specific recommendations. We detail context-specific responses for each kind of hope. By attending to these nuances, not only will the parent or guardian's perspective be heard but also the pediatrician's recommendation can strike a balance between advocating for their conception of good medicine and respecting the parent or guardian's beliefs.

Estado Terminal , Esperança , Pais , Avaliação de Processos em Cuidados de Saúde , Relações Profissional-Família , Doente Terminal , Criança , Comunicação , Humanos , Tutores Legais , Futilidade Médica/ética , Equipe de Assistência ao Paciente , Pediatras
Cochrane Database Syst Rev ; 1: CD004770, 2020 01 21.
Artigo em Inglês | MEDLINE | ID: mdl-31960954


BACKGROUND: Delirium is a syndrome characterised by an acute disturbance of attention and awareness which develops over a short time period and fluctuates in severity over the course of the day. It is commonly experienced during inpatient admission in the terminal phase of illness. It can cause symptoms such as agitation and hallucinations and is distressing for terminally ill people, their families and staff. Delirium may arise from any number of causes and treatment should aim to address these causes. When this is not possible, or treatment is unsuccessful, drug therapy to manage the symptoms may become necessary. This is the second update of the review first published in 2004. OBJECTIVES: To evaluate the effectiveness and safety of drug therapies to manage delirium symptoms in terminally ill adults. SEARCH METHODS: We searched CENTRAL, MEDLINE, Embase, CINAHL and PsycINFO from inception to July 2019, reference lists of retrieved papers, and online trial registries. SELECTION CRITERIA: We included randomised controlled trials of drug therapies in any dose by any route, compared to another drug therapy, a non-pharmacological approach, placebo, standard care or wait-list control, for the management of delirium symptoms in terminally ill adults (18 years or older). DATA COLLECTION AND ANALYSIS: We independently screened citations, extracted data and assessed risk of bias. Primary outcomes were delirium symptoms; agitation score; adverse events. Secondary outcomes were: use of rescue medication; cognitive status; survival. We applied the GRADE approach to assess the overall quality of the evidence for each outcome and we include eight 'Summary of findings' tables. MAIN RESULTS: We included four studies (three new to this update), with 399 participants. Most participants had advanced cancer or advanced AIDS, and mild- to moderate-severity delirium. Meta-analysis was not possible because no two studies examined the same comparison. Each study was at high risk of bias for at least one criterion. Most evidence was low to very low quality, downgraded due to very serious study limitations, imprecision or because there were so few data. Most studies reported delirium symptoms; two reported agitation scores; three reported adverse events with data on extrapyramidal effects; and none reported serious adverse events. 1. Haloperidol versus placebo There may be little to no difference between placebo and haloperidol in delirium symptoms within 24 hours (mean difference (MD) 0.34, 95% confidence interval (CI) -0.07 to 0.75; 133 participants). Haloperidol may slightly worsen delirium symptoms compared with placebo at 48 hours (MD 0.49, 95% CI 0.10 to 0.88; 123 participants with mild- to moderate-severity delirium). Haloperidol may reduce agitation slightly compared with placebo between 24 and 48 hours (MD -0.14, 95% -0.28 to -0.00; 123 participants with mild- to moderate-severity delirium). Haloperidol probably increases extrapyramidal adverse effects compared with placebo (MD 0.79, 95% CI 0.17 to 1.41; 123 participants with mild- to moderate-severity delirium). 2. Haloperidol versus risperidone There may be little to no difference in delirium symptoms with haloperidol compared with risperidone within 24 hours (MD -0.42, 95% CI -0.90 to 0.06; 126 participants) or 48 hours (MD -0.36, 95% CI -0.92 to 0.20; 106 participants with mild- to moderate-severity delirium). Agitation scores and adverse events were not reported for this comparison. 3. Haloperidol versus olanzapine We are uncertain whether haloperidol reduces delirium symptoms compared with olanzapine within 24 hours (MD 2.36, 95% CI -0.75 to 5.47; 28 participants) or 48 hours (MD 1.90, 95% CI -1.50 to 5.30, 24 participants). Agitation scores and adverse events were not reported for this comparison. 4. Risperidone versus placebo Risperidone may slightly worsen delirium symptoms compared with placebo within 24 hours (MD 0.76, 95% CI 0.30 to 1.22; 129 participants); and at 48 hours (MD 0.85, 95% CI 0.32 to 1.38; 111 participants with mild- to moderate-severity delirium). There may be little to no difference in agitation with risperidone compared with placebo between 24 and 48 hours (MD -0.05, 95% CI -0.19 to 0.09; 111 participants with mild- to moderate-severity delirium). Risperidone may increase extrapyramidal adverse effects compared with placebo (MD 0.73 95% CI 0.09 to 1.37; 111 participants with mild- to moderate-severity delirium). 5. Lorazepam plus haloperidol versus placebo plus haloperidol We are uncertain whether lorazepam plus haloperidol compared with placebo plus haloperidol improves delirium symptoms within 24 hours (MD 2.10, 95% CI -1.00 to 5.20; 50 participants with moderate to severe delirium), reduces agitation within 24 hours (MD 1.90, 95% CI 0.90 to 2.80; 52 participants), or increases adverse events (RR 0.70, 95% CI -0.19 to 2.63; 31 participants with moderate to severe delirium). 6. Haloperidol versus chlorpromazine We are uncertain whether haloperidol reduces delirium symptoms compared with chlorpromazine at 48 hours (MD 0.37, 95% CI -4.58 to 5.32; 24 participants). Agitation scores were not reported. We are uncertain whether haloperidol increases adverse events compared with chlorpromazine (MD 0.46, 95% CI -4.22 to 5.14; 24 participants). 7. Haloperidol versus lorazepam We are uncertain whether haloperidol reduces delirium symptoms compared with lorazepam at 48 hours (MD -4.88, 95% CI -9.70 to 0.06; 17 participants). Agitation scores were not reported. We are uncertain whether haloperidol increases adverse events compared with lorazepam (MD -6.66, 95% CI -14.85 to 1.53; 17 participants). 8. Lorazepam versus chlorpromazine We are uncertain whether lorazepam reduces delirium symptoms compared with chlorpromazine at 48 hours (MD 5.25, 95% CI 0.38 to 10.12; 19 participants), or increases adverse events (MD 7.12, 95% CI 1.08 to 15.32; 18 participants). Agitation scores were not reported. SECONDARY OUTCOMES: use of rescue medication, cognitive impairment, survival There were insufficient data to draw conclusions or assess GRADE. AUTHORS' CONCLUSIONS: We found no high-quality evidence to support or refute the use of drug therapy for delirium symptoms in terminally ill adults. We found low-quality evidence that risperidone or haloperidol may slightly worsen delirium symptoms of mild to moderate severity for terminally ill people compared with placebo. We found moderate- to low-quality evidence that haloperidol and risperidone may slightly increase extrapyramidal adverse events for people with mild- to moderate-severity delirium. Given the small number of studies and participants on which current evidence is based, further research is essential.

Antipsicóticos/uso terapêutico , Delírio/tratamento farmacológico , Doente Terminal/psicologia , Adulto , Clorpromazina/uso terapêutico , Delírio/etiologia , Haloperidol/uso terapêutico , Humanos , Lorazepam/uso terapêutico , Ensaios Clínicos Controlados Aleatórios como Assunto
Pediatr Blood Cancer ; 67(2): e27993, 2020 02.
Artigo em Inglês | MEDLINE | ID: mdl-31595653


BACKGROUND: Most parents vividly recall the weeks, days, and moments preceding their child's death for years to come. Dissatisfaction with communication about their child's condition and lack of guidance can contribute to stress prior to a child's death. Based on findings from a study assessing the degree of preparation bereaved parents received and our collective clinical experience, the authors provide suggestions on end-of-life communication and guidance for parents. METHODS: Caregivers of a child who died from cancer were invited to complete a 46-item survey through a closed social media (Facebook) group ("Parents who lost children to cancer"). In four months' time, 131 bereaved caregivers completed the survey. Results were analyzed using descriptive statistics, chi-square analyses, and a thematic content analysis framework. The mean age of the child at the time of death was 12. RESULTS: Approximately 40% of the parents in this study felt unprepared for both the medical problems their child faced and how to respond to their child's emotional needs; fewer than 10% felt very prepared for either. Parents were more likely to feel unprepared when perceived suffering was high, highlighting the critical importance of communication and support from the healthcare team as an adjunct to optimal symptom control. CONCLUSIONS: Through quantitative and open-ended responses, this study identified specific medical and emotional issues about which parents wanted greater preparation. Future research to evaluate guidance strategies to reduce parental suffering prior to the child's death is needed.

Luto , Comunicação , Neoplasias/mortalidade , Neoplasias/psicologia , Pais/psicologia , Estresse Psicológico , Doente Terminal/psicologia , Adolescente , Adulto , Idoso , Atitude Frente a Morte , Criança , Pré-Escolar , Feminino , Seguimentos , Humanos , Lactente , Masculino , Pessoa de Meia-Idade , Relações Profissional-Família , Estudos Retrospectivos , Inquéritos e Questionários , Adulto Jovem
Am J Hosp Palliat Care ; 37(2): 129-135, 2020 Feb.
Artigo em Inglês | MEDLINE | ID: mdl-31366208


BACKGROUND: Patients with advanced non-small cell lung cancer greatly care about where they will die. Most people in Japan preferred their location of death as their homes. But only 8.2% of patients with cancer spend their last days at home with palliative care in Japan. Many patients with cancer are still going to spend their last days at a hospital (81.7%). OBJECTIVE: We examined the survival times of such patients according to their place of death; that is, whether they died at home, at a hospice, or at a hospital, and investigated patient characteristics. RESULTS: Among the 313 patients recruited, 214 were analyzed in this study: 90, 49, and 75 received hospital-based, home-based, and hospice-based palliative care, respectively. The patients who died at a hospice exhibited significantly longer survival than those who died at hospital (estimated median survival time, 420 days [95% confidence interval [CI]: 325-612 days] versus 252 days [95% CI: 201-316 days]; P < .0001). The characteristics of patients did not differ significantly according to place of death. CONCLUSIONS: Patients who died at a hospice or at home exhibited significantly longer survival than those who died at a hospital for advanced non-small cell lung cancer.

Carcinoma Pulmonar de Células não Pequenas/psicologia , Cuidados Paliativos na Terminalidade da Vida/psicologia , Neoplasias Pulmonares/psicologia , Preferência do Paciente/psicologia , Doente Terminal/psicologia , Idoso , Idoso de 80 Anos ou mais , Feminino , Humanos , Japão , Masculino , Pessoa de Meia-Idade , Cuidados Paliativos/psicologia , Prognóstico , Assistência Terminal/psicologia
Am J Hosp Palliat Care ; 37(2): 136-141, 2020 Feb.
Artigo em Inglês | MEDLINE | ID: mdl-31337229


OBJECTIVE: To characterize the use of palliative care for patients with metastatic prostate cancer and identify its associations with costs, hospital course, and discharge. MATERIALS AND METHODS: Using the National Inpatient Sample database from 2012 to 2013, we identified 99 070 patients with metastatic prostate cancer and analyzed the data from their hospital admissions using descriptive statistics, χ2 analysis, and regression modeling. RESULTS: Palliative care services were consulted in 10.4% (10 300) of metastatic prostate cancer admissions. These admissions were associated with nonelective origin, acute complications, and reduced surgical procedures and chemotherapy. Patients in private, investor-owned hospitals had a 51.6% less consultations (P < .001), while nonprofit and government, nonfederal hospitals had 4.7% and 7.8% more consultations (P < .001). Median costs and charges were only marginally less (2.1% and 5.6%, respectively, P < .001), length of stay was 22% higher (P < .001), and in-house mortality was 147.2% higher in the consultation group (P < .001). Controlling for other factors, patients seen by palliative care were more likely to have do-not-resuscitate orders (odds ratio [OR]: 5.25, P < .001) and be transferred to another facility like hospice (OR: 3.90, P < .001) or to home health (OR: 3.85, P < .001). CONCLUSIONS: Palliative care consultation could improve care for patients with metastatic prostate cancer in a different manner than observed in other diseases. With our characterization of the incidence and patient and hospital factors, we can conclude that there is room to expand palliative care's role beyond uninsured patients in large, urban teaching hospitals.

Cuidados Paliativos/estatística & dados numéricos , Neoplasias da Próstata/terapia , Encaminhamento e Consulta/estatística & dados numéricos , Assistência Terminal/estatística & dados numéricos , Doente Terminal/estatística & dados numéricos , Idoso , Humanos , Pacientes Internados/estatística & dados numéricos , Masculino , Pessoa de Meia-Idade , Cuidados Paliativos/psicologia , Alta do Paciente/estatística & dados numéricos , Neoplasias da Próstata/psicologia , Assistência Terminal/psicologia , Doente Terminal/psicologia
Pediatrics ; 145(1)2020 01.
Artigo em Inglês | MEDLINE | ID: mdl-31806669


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.

Cuidados Paliativos/história , Assistência Terminal/história , Adolescente , Analgésicos Opioides/história , Analgésicos Opioides/uso terapêutico , Criança , História do Século XX , História do Século XXI , Humanos , Lactente , Mães/psicologia , Relações Médico-Paciente , Doente Terminal/história , Doente Terminal/psicologia
Rev. Pesqui. (Univ. Fed. Estado Rio J., Online) ; 12: 484-489, jan.-dez. 2020. []
Artigo em Inglês, Português | LILACS, BDENF - Enfermagem | ID: biblio-1087563


Objetivo: analisar a percepção de enfermeiros acerca da sua vivência em cuidados paliativos. Método: estudo descritivo e exploratório com abordagem qualitativa realizado em um hospital de referência em cuidados paliativos. A amostra foi constituída por 12 enfermeiros assistenciais. Para coleta de dados foi realizada uma entrevista com um roteiro semiestruturado composto por duas partes: a primeira abrangendo dados sociodemográficos e a segunda contemplava quatro questões para atender aos objetivos do estudo. Os dados oriundos da entrevista foram transcritos e em seguida avaliados mediante análise de conteúdo que permitiu a construção de três categorias: percepções acerca do que são cuidados paliativos; pontos relevantes a serem considerados para a realização dos cuidados paliativos; e o manejo da dor em cuidados paliativos. Resultados: os enfermeiros destacam que os cuidados paliativos devem contemplar não só a atenção aos pacientes, mas a família, ainda revelando sentimentos e medidas importantes como afeto, carinho e conforto. Conclusão: há um processo de efetivação acerca dos princípios que permeiam esse tipo de cuidado e cabe salientar que é um serviço novo que está em processo de formação e capacitação contínuo, o que tem contribuído para os resultados

Objective: to analyze the perception of nurses about their experience in palliative care. Method: a descriptive and exploratory study with a qualitative approach conducted in a referral hospital in palliative care. The sample consisted of 12 care nurses. For data collection an interview was conducted with a semi-structured script covering sociodemographic data and four questions to meet the objectives of the study. Data were transcribed and evaluated by content analysis. Results: the nurses emphasized that palliative care should not only contemplate patients, but the family, revealing feelings and important measures such as affection, affection, comfort and pain management. Conclusion: there is a process of implementation about the principles that permeate this type of care and it is worth noting that it is a new service that is in the process of continuous formation and training, which has contributed to the results

Objetivo: analizar la percepción de las enfermeras sobre su experiencia en cuidados paliativos. Método: un estudio descriptivo y exploratorio con un enfoque cualitativo realizado en un hospital de referencia en cuidados paliativos. La muestra consistió en 12 enfermeras de atención. Para la recopilación de datos, se realizó una entrevista con un guión semiestructurado que cubre datos sociodemográficos y cuatro preguntas para cumplir con los objetivos del estudio. Los datos fueron transcritos y evaluados por análisis de contenido. Resultados: las enfermeras enfatizaron que los cuidados paliativos no solo deben contemplar a los pacientes, sino también a la familia, que revelan sentimientos y medidas importantes como el afecto, el afecto, la comodidad y el manejo del dolor. Conclusión: existe un proceso de implementación sobre los principios que impregnan este tipo de atención y vale la pena señalar que se trata de un nuevo servicio que está en proceso de formación y capacitación continua, lo que ha contribuido a los resultados

Humanos , Cuidados Paliativos , Doente Terminal , Humanização da Assistência , Cuidados de Enfermagem
Artigo em Inglês, Português | LILACS, BDENF - Enfermagem | ID: biblio-1102737


Objetivo: Compreender a vivência do cuidador familiar de paciente com câncer na fase final de vida em cuidados paliativos. Método: Estudo exploratório com abordagem qualitativa, realizado em um hospital da cidade de João Pessoa ­ PB. Foram entrevistados 15 cuidadores familiares, no período de maio a julho de 2019. Utilizou-se um roteiro semiestruturado para coletar os dados. As informações foram analisadas conforme a técnica de análise de conteúdo. Resultados: A análise do material empírico possibilitou a construção de duas categorias temáticas: I ­ Repercussões na saúde física e psicológica do cuidador familiar e II ­ Perspectivas de futuro diante da proximidade de morte do seu ente querido. Conclusão: É importante que o profissional utilize na sua assistência ferramentas que facilitem o processo de adaptação do cuidador à nova situação, buscando reduzir sobrecargas físicas e emocionais, e o preparando, para que ele possa dar continuidade a sua vida após a perda

Objective: The study's main purpose has been to comprehend the experience of the family caregiver of a cancer patient in the last stage of life undergoing palliative care. Method: It is an exploratory study with a qualitative approach, carried out in a hospital in the city of João Pessoa, Paraiba State. 15 family caregivers were interviewed, during the period of May to July in 2019. A semi-structured interview was used to collect data. The information were analyzed according to the content analysis technique. Results: The analysis of the empirical material allowed the construction of two thematic categories: I ­ Repercussion in the physical and psychological health of the family caregiver and II ­ Future perspectives in the face of the proximity of a loved one's death. Conclusion: It is important for professionals to use in their care tools that facilitate the process of adaptation of the caregiver to the new situation, seeking to reduce physical and emotional overloads, and preparing them so that they can continue their life after the loss

Objetivo: El propósito del trabajo es comprender la experiencia de los cuidadores familiares de pacientes con cáncer en la fase final de la vida en cuidados paliativos. Método: Este es un estudio exploratorio con enfoque cualitativo, realizado en un hospital de la ciudad de João Pessoa, estado de Paraíba. Se entrevistó a quince cuidadores familiares de mayo a julio de 2019. Se utilizó un script semiestructurado para recopilar los datos. La información se analizó de acuerdo con la técnica de análisis de contenido. Resultados: El análisis del material empírico permitió la construcción de dos categorías temáticas: I - Repercusiones sobre la salud física y psicológica del cuidador familiar y II - Perspectivas futuras en vista de la proximidad de la muerte de su ser querido. Conclusión: Es importante que los profesionales utilicen en sus herramientas de cuidado que faciliten el proceso de adaptación del cuidador a la nueva situación, buscando reducir las cargas físicas y emocionales, y preparándolos para que puedan continuar su vida después de la pérdida

Humanos , Masculino , Feminino , Qualidade de Vida , Cuidadores , Sobreviventes de Câncer , Cuidados Paliativos , Doente Terminal
Ann Emerg Med ; 75(5): 615-626, 2020 05.
Artigo em Inglês | MEDLINE | ID: mdl-31864728


STUDY OBJECTIVE: Palliative patients often visit the emergency department (ED) with respiratory distress during their end-of-life period. The goal of management is alleviating dyspnea and providing comfort. High-flow nasal cannula may be an alternative oxygen-delivering method for palliative patients with do-not-intubate status. We therefore aim to compare the efficacy of high-flow nasal cannula with conventional oxygen therapy in improving dyspnea of palliative patients with do-not-intubate status who have hypoxemic respiratory failure in the ED. METHODS: This randomized, nonblinded, crossover study was conducted with 48 palliative patients aged 18 years or older with do-not-intubate status who presented with hypoxemic respiratory failure to the ED of Siriraj Hospital, Bangkok, Thailand. The participants were randomly allocated to conventional oxygen therapy for 60 minutes, followed by high-flow nasal cannula for 60 minutes (n=24) or vice versa (n=24). The primary outcome was modified Borg scale score. The secondary outcomes were numeric rating scale score of dyspnea and vital signs. RESULTS: Intention-to-treat analysis included 44 patients, 22 in each group. Baseline mean modified Borg scale score was 7.6 (SD 2.2) (conventional oxygen therapy first) and 8.2 (SD 1.8) (high-flow nasal cannula first). At 60 minutes, mean modified Borg scale score in patients receiving conventional oxygen therapy and high-flow nasal cannula was 4.9 (standard of mean 0.3) and 2.9 (standard of mean 0.3), respectively (mean difference 2.0; 95% confidence interval 1.4 to 2.6). Results for the numeric rating scale score of dyspnea were similar to those for the modified Borg scale score. Respiratory rates were lower with high-flow nasal cannula (mean difference 5.9; 95% confidence interval 3.5 to 8.3), and high-flow nasal cannula was associated with a significantly lower first-hour morphine dose. CONCLUSION: High-flow nasal cannula was superior to conventional oxygen therapy in reducing the severity of dyspnea in the first hour of treatment in patients with do-not-intubate status and hypoxemic respiratory failure.

Dispneia/terapia , Serviço Hospitalar de Emergência , Oxigenoterapia , Cuidados Paliativos/métodos , Doente Terminal , Idoso , Cânula , Estudos Cross-Over , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Oxigenoterapia/instrumentação , Tailândia , Resultado do Tratamento
Support Care Cancer ; 28(1): 87-98, 2020 Jan.
Artigo em Inglês | MEDLINE | ID: mdl-30982093


PURPOSE: Dyspnea is frequently experienced in advanced cancer patients and is associated with poor prognosis and functional decline. This study used the Edmonton Symptom Assessment System (ESAS) to characterize the relationship between dyspnea and concurrent symptoms experienced by advanced cancer patients. METHODS: A prospective database was collected and analyzed to extract patient demographics and ESAS scores. Logistic regression analysis and generalized estimating equations (GEE) identified correlations of other ESAS symptoms in three categories: severity of dyspnea (none, mild, moderate, severe), moderate/severe dyspnea (ESAS ≥ 4), and presence of dyspnea (ESAS ≥ 1), at patients' first visit and over time, respectively. RESULTS: Multivariable analysis revealed drowsiness (p = 0.001), and anxiety (p = 0.01) and appetite loss (p = 0.02) were associated with increased severity of dyspnea at first visit. Over time, tiredness (p = 0.02), drowsiness (p = 0.04), nausea (p = 0.02), and anxiety (p = 0.0006) were more likely to experience increased dyspnea severity. Tiredness (p = 0.0003), depression (p = 0.03), and appetite loss (p = 0.003) were significant for moderate/severe dyspnea at first visit. Over multiple visits, tiredness (p < 0.0001), anxiety (p = 0.0008), and appetite loss (p = 0.0008) had higher probabilities of moderate/severe dyspnea. For the presence of dyspnea at the first visit, anxiety (p = 0.03) and drowsiness (p = 0.002) were significantly correlated with an increased frequency of dyspnea. Over time, anxiety (p < 0.0001) and drowsiness (p < 0.0001) remained significant with the addition of nausea (p = 0.0007). CONCLUSIONS: The highly interactive relationship between dyspnea and other common cancer symptoms necessitates the development of comprehensive symptom assessments and utilization of multimodal management approaches that consider concurrent symptoms for improved identification and treatment of dyspnea.

Dispneia/diagnóstico , Dispneia/etiologia , Neoplasias/complicações , Neoplasias/patologia , Avaliação de Sintomas/métodos , Adulto , Idoso , Idoso de 80 Anos ou mais , Bases de Dados Factuais , Progressão da Doença , Dispneia/patologia , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Neoplasias/diagnóstico , Neoplasias/terapia , Cuidados Paliativos/métodos , Prognóstico , Estudos Retrospectivos , Fatores de Risco , Índice de Gravidade de Doença , Doente Terminal , Adulto Jovem
Am J Hosp Palliat Care ; 37(1): 52-57, 2020 Jan.
Artigo em Inglês | MEDLINE | ID: mdl-31189325


OBJECTIVES: Although the experiences of family members who care for relatives at the end of life have been researched extensively, little is known about the needs and experiences of families caring for hospice patients with pacemakers. AIM: To better understand the experiences of family caregivers of a terminally ill patient who received hospice care at home and chose deactivation of a pacemaker. DESIGN: The exploratory, cross-sectional design involved semistructured, in-depth interviews. A narrative analysis focusing on form and content was chosen to analyze the data. PARTICIPANTS: Five bereaved caregivers from the Midwestern United States who provided care and participated in the deactivation of their family member's pacemaker. RESULTS: Four storylines that described, gave meaning to, and contextualized the caregivers' experiences were identified: "I am done. I am not doing it anymore"; "Whatever you decide, I'll support you"; "It is really difficult to watch, but you want to be there"; and "I will not have part of this." Caregivers struggled with lack of support, understanding, and acceptance from medical providers when their family member decided to have her pacemaker deactivated, and they believed that the hospice model of care was appropriate to support and help them in that process. CONCLUSIONS: This research aids in understanding the ramifications of family-provided end-of-life care to a patient whose pacemaker has been deactivated. This can help to increase hospice clinicians' knowledge regarding caregivers' experiences facing deactivation of a pacemaker, before and after the patient's death.

Cuidadores/psicologia , Família/psicologia , Cuidados Paliativos na Terminalidade da Vida/psicologia , Marca-Passo Artificial , Doente Terminal/psicologia , Idoso , Idoso de 80 Anos ou mais , Atitude do Pessoal de Saúde , Estudos Transversais , Tomada de Decisões , Feminino , Serviços de Assistência Domiciliar/organização & administração , Humanos , Entrevistas como Assunto , Pessoa de Meia-Idade , Apoio Social , Estados Unidos
J Palliat Care ; 35(1): 13-20, 2020 Jan.
Artigo em Inglês | MEDLINE | ID: mdl-30757945


CONTEXT: Though palliative sedation has been recognized as an acceptable practice in Canada for many years now, there is a lack of clinical research and guidelines pertaining to its use as a treatment of existential refractory symptoms in the terminally ill. OBJECTIVES: This scoping review aimed to survey the literature surrounding palliative sedation and existential suffering and to inform research, policy, and practice. METHODS: To address the main research question: Is palliative sedation an acceptable intervention to treat existential refractory symptoms in adults aged 65 and older? a scoping review following Arksey and O'Malley's framework was performed, spanning electronic databases of the peer reviewed and grey literature. Articles were screened for inclusion, and a thematic content analysis allowed for a summary of key findings. RESULTS: Out of 427 search results, 71 full text articles were obtained, 20 of which were included. Out of these articles, four themes were identified as key findings. These included: (1) Ethical considerations; (2) The role of the health care provider; looking specifically at the impact on nurses; (3) The need for multidisciplinary care teams; and (4) Existential suffering's connection to religiosity and spirituality. CONCLUSION: Palliative sedation to treat existential refractory symptoms was labelled a controversial practice. A shortage of evidence-based resources limits the current literature's ability to inform policy and clinical practice. There is a need for both qualitative and quantitative multi-center research so health care professionals and regional-level institutions have firm roots to establish proper policy and practice.

Sedação Profunda/normas , Existencialismo/psicologia , Hipnóticos e Sedativos/normas , Cuidados Paliativos/psicologia , Cuidados Paliativos/normas , Estresse Psicológico/tratamento farmacológico , Doente Terminal/psicologia , Adulto , Idoso , Idoso de 80 Anos ou mais , Feminino , Humanos , Hipnóticos e Sedativos/uso terapêutico , Masculino , Pessoa de Meia-Idade , Guias de Prática Clínica como Assunto , Inquéritos e Questionários
Invest Educ Enferm ; 37(3)2019 Sep.
Artigo em Inglês | MEDLINE | ID: mdl-31830405


OBJECTIVES: The purpose, herein, was to determine the moral sensitivity of nurses when caring for terminally ill patients. METHODS: Descriptive study conducted in the city of Cartagena (Colombia) with the participation of 118 nurses with minimum experience of six months in caring for the terminally ill in general hospitalization, caring for chronic patients, and intensive care units. The study used the 23-item questionnaire on Moral Sensitivity in Nursing Care - (Sensibilidad Moral en el Cuidado Enfermero -CuSMCE-23, in spanish) - by Campillo, which has six Likert-type response options (0 = total disagreement, to 5 = total agreement) and which has two dimensions: Nurse values (12 items) and Care responses (11 items). A higher score meant a higher degree of moral sensitivity. RESULTS: . It was found that 89.8% of the participants were women; 20.3% had a graduate degree; 39.8% had less than five years of care experience; 58.5% worked in a public institution - by type of service: 58.5% worked in general hospitalization; 32.2% in the intensive care unit; and 9.3% with chronic patients. The global moral sensitivity regarding the terminally ill in the study group was at 80%. By dimensions, while the Values dimension obtained 90%, the Care responses dimension only reached 70.4%, with the latter dimension showing difficulties in the items: 'Often, when I am with a patient, I talk about myself to be more comfortable' (27.1%), 'It is hard for me to accept certain decisions by the patients' (55.1%), and 'It is hard for me to identify concerns regarding the religious expression' (60.2%). CONCLUSIONS: Although the global levels of nurse's moral sensitivity regarding the terminally ill and of the dimension Nurse Values are high, the dimension of Care responses has limitations, especially in accepting the diversity of expressions presented by patients.

Atitude do Pessoal de Saúde , Enfermeiras e Enfermeiros/psicologia , Recursos Humanos de Enfermagem no Hospital/psicologia , Doente Terminal/psicologia , Adulto , Colômbia , Feminino , Humanos , Unidades de Terapia Intensiva , Masculino , Princípios Morais , Inquéritos e Questionários , Adulto Jovem
Gac. sanit. (Barc., Ed. impr.) ; 33(6): 568-574, nov.-dic. 2019. tab, graf
Artigo em Inglês | IBECS | ID: ibc-189852


Objective: To measure and assess differences by educational level in the place of death for cancer patients, and to determine whether patterns of geographical disparities are associated with access to palliative care services in the municipality of residence. Method: We analysed the death certificates of adults (older than 24) who died of cancer (ICD-10 C00 to C97) in Spain during 2015, either at home, in hospital or in a long-term care centre. Of the 105,758 individuals included in the study population, 75.2% lived in one of the 746 identifiable municipalities (more than 10,000 inhabitants). This individual database was combined with three economic databases at municipal level and with a directory of palliative care resources published by the Sociedad Española de Cuidados Paliativos. Multilevel models were estimated to predict the place of death according to individual characteristics. Generalised least squares regression models were then applied to the municipal effects estimated in the first stage. Results: The probability of dying in long-term care centre decreases as levels of education increase; the probability of dying at home, rather than in hospital, is higher for patients with higher education. Dying in hospital is an urban phenomenon. There are large differences between Spanish regions. Access to palliative services is only of marginal significance in accounting for the systematic differences observed between municipalities. Conclusions: Developing specific plans for palliative care, with an active role being played by primary care teams, may help improve end-of-life care in Spain

Objetivo: Medir y evaluar las diferencias por nivel educativo respecto al lugar de muerte de pacientes con cáncer en España, y determinar si los patrones de desigualdad geográfica están asociados con el acceso a servicios de cuidados paliativos en el municipio de residencia. Método: Analizamos los certificados de defunción de mayores de 24 años que murieron de cáncer (CIE-10 C00-C97) en España durante 2015, en el hogar, en el hospital o en una residencia sociosanitaria. Sobre una población total de 105.758 personas, el 75,2% vivía en uno de los 746 municipios identificables (más de 10.000 habitantes). La base de datos individual se combina con datos económicos de ámbito municipal y con el directorio de recursos de cuidados paliativos publicado por la Sociedad Española de Cuidados Paliativos. Se estiman modelos multinivel para predecir el lugar de la muerte de acuerdo con las características individuales. A continuación, se estiman modelos de regresión por mínimos cuadrados generalizados sobre los efectos municipales estimados en el modelo anterior. Resultados: La probabilidad de morir en casa, frente al hospital, es mayor en los pacientes con educación superior. Morir en el hospital resulta un fenómeno urbano. Hay grandes diferencias entre regiones. El acceso a los servicios paliativos solo tiene una importancia marginal en la explicación de las diferencias entre municipios. Conclusión: El desarrollo de planes específicos para cuidados paliativos, con un papel más activo de los equipos de atención primaria, puede ayudar a mejorar la atención sanitaria al final de la vida en España

Humanos , Masculino , Feminino , Pessoa de Meia-Idade , Idoso , Idoso de 80 Anos ou mais , Causas de Morte , Evolução Fatal , Neoplasias/mortalidade , Assistência Terminal/estatística & dados numéricos , Doente Terminal/estatística & dados numéricos , Cuidados Paliativos na Terminalidade da Vida/estatística & dados numéricos , Estudos Retrospectivos , Características de Residência , Atitude Frente a Morte , Escolaridade , Espanha/epidemiologia , Moradias Assistidas/organização & administração , Fatores Socioeconômicos
Ann Palliat Med ; 8(5): 542-550, 2019 Nov.
Artigo em Inglês | MEDLINE | ID: mdl-31865719


BACKGROUND: This study considers the specific context of the end of life, in particular the agony phase, and the experience of sharing the body observation competence with the relatives of dying patients, in order to consider the effect of such psychological intervention. METHODS: The research was conducted in two phases: during the pre-exitus period (days or hours before the death of the patient) six relatives received some information .on the phenomenology of agony; during the post-exitus, they participated in semi-structured interviews, which were audio-recorded and transcribed with the purpose of extracting relevant aspects of their experience with their terminally-ill relative. The Interpretative Phenomenological Analysis (IPA) was used to cluster the emerged experiences by thematic analysis, which was performed using the Atlas.ti 7 software. RESULTS: The relatives' verbatim representation is clustered in three areas of thematic prevalence: context and choice of the hospice, phenomenology of agony and psychological support. The first area shows how essential the choice of the hospice was for the patient. Even if the hospice is perceived as a place of death, it allows to manage the pain and simultaneously relieves the caregiver's burden. The second area describes the process of perception of body changes during agony. Finally, the third area outlines how giving elements to recognise the progression of the dying body and suggestions on the functional behaviour around the agonising patient may fill the cultural lack of practical experience regarding dying. CONCLUSIONS: The results require further investigation, starting from the positive feedback on the efficacy of a specific support model called "human protocol".

Família/psicologia , Dor/psicologia , Doente Terminal/psicologia , Adaptação Psicológica , Cuidadores/psicologia , Humanos , Pesquisa Qualitativa , Inquéritos e Questionários
BMC Med Ethics ; 20(1): 103, 2019 12 27.
Artigo em Inglês | MEDLINE | ID: mdl-31881966


BACKGROUND: Medical Assistance in Dying (MAID) in Canada came into effect in 2016 with the passing of Bill C-14. As patient interest and requests for MAID continue to evolve in Canada, it is important to understand the attitudes of future providers and the factors that may influence their participation. Attitudes towards physician hastened death (PHD) in general and the specific provision of MAID (e.g., causing death by lethal prescription or injection) are unknown among Canadian residents. This study examined residents' attitudes towards PHD and MAID, and identified factors (e.g., demographics, clinical exposure to death and dying) that may influence their decision to participate in PHD and provide MAID. METHODS: A cross-sectional survey was adapted from prior established surveys on MAID to reflect the Canadian setting. All Canadian family medicine programs were invited to participate. The survey was distributed between December 2016 and April 2017. Analysis of the results included descriptive statistics to characterize the survey participants and multivariable logistic regressions to identify factors that may influence residents' attitudes towards PHD and MAID. RESULTS: Overall, 247 residents from 6 family medicine training programs in Canada participated (response rate of 27%). While residents were most willing to participate in treatment withdrawal (52%), active participation in PHD (41%) and MAID by prescription of a lethal drug (31%) and lethal injection (24%) were less acceptable. Logistic regressions identified religion as a consistent and significant factor impacting residents' willingness to participate in PHD and MAID. Residents who were not strictly practicing a religion were more likely to be willing to participate in PHD (OR = 17.38, p < 0.001) and MAID (lethal drug OR = 10.55, p < 0.01, lethal injection OR = 8.54, p < 0.05). Increased clinical exposure to death and dying crudely correlated with increased willingness to participate in PHD and MAID, but when examined in multivariable models, only a few activities (e.g., declaring death, completing a death certificate) had a statistically significant association. Other significant factors included the residents' sex and location of training. CONCLUSIONS: Residents are hesitant to provide MAID themselves, with religious faith being a major factor impacting their decision.

Atitude do Pessoal de Saúde , Medicina de Família e Comunidade , Internato e Residência , Suicídio Assistido , Adulto , Canadá , Estudos Transversais , Feminino , Pesquisas sobre Serviços de Saúde , Humanos , Masculino , Cuidados Paliativos , Doente Terminal