Caracterización de los cuidadores de pacientes terminales / Characterization of Caregivers of Terminally ill Patients

Introducción: Resultan alarmantes las cifras de pacientes terminales tanto a nivel mundial como en Cuba, por lo que es necesario estudiar la preparación de los cuidadores de estos pacientes. Objetivo: Caracterizar al cuidador del paciente con enfermedad terminal, su preparación, experiencia, conocimientos sobre los cuidados y sobrecarga emocional en el municipio de San Luis. Métodos: Se realizó un estudio descriptivo y transversal en el periodo 2017-2019, en un universo de 47 cuidadores, a los que se les aplicó un muestreo no probabilístico. La muestra quedó conformada por 20 cuidadores que cumplieron los criterios de inclusión establecidos y dieron su consentimiento informado. Los instrumentos usados fueron la entrevista individual y la escala de carga del cuidador de Zarit. Se utilizó el método empírico y el estadístico y los textos se procesaron con Word XP, las tablas y gráficos se realizaron con Excel XP. Resultados: Prevaleció el nivel de escolaridad preuniversitaria y el estado civil casado. El grado de parentesco más frecuente en la muestra fue los hijos que no poseían experiencia previa de cuidado. Las causas más frecuentes de las enfermedades terminales fueron las demencias. Conclusiones: Predominaron los mayores de 60 años, el sexo femenino con escasos conocimientos sobre los cuidados, lo que influyó en la alta sobrecarga emocional presente en ellos(AU)

Introduction: The figures corresponding to terminally ill patients, both worldwide and in Cuba, are alarming, a reason why it is necessary to study the preparation of the caregivers of these patients. Objective: To characterize the caregiver of the terminally ill patient, their preparation, experience, knowledge about care and emotional overload in San Luis Municipality. Methods: A descriptive and cross-sectional study was carried out in the period 2017-2019, with a universe of 47 caregivers, to whom a nonprobabilistic sampling was applied. The sample was made up of twenty caregivers who met the established inclusion criteria and gave their informed consent. The instruments used were the individual interview and the Zarit Caregiver Load Scale. Empirical and statistical methods were used. The texts were processed with Word XP. The tables and graphs were made with Excel XP. Results: There was a prevalence of pre-university education level and married as marital status. The most frequent degree of kinship in the sample was made up of children who had no previous caregiving experience. The most frequent causes of terminal illnesses were dementias. Conclusions: Those over sixty years of age predominated, as well as the female sex with little knowledge about care, which influenced the high emotional overload present in them(AU)

The role of end-of-life palliative sedation: medical and ethical aspects - Review / O papel da sedação paliativa no fim da vida: aspectos médicos e éticos - Revisão

Abstract Background and objective: Palliative sedation is a medical procedure that has been used for more than 25 years to relieve refractory symptoms not responsive to any previous treatment in patients with no possibility of cure and near the end of life. Many uncertainties persist on the theme regarding definition, indications, decision making, most appropriate place to perform the procedure, most used drugs, need for monitoring, fluids and nutritional support, and possible ethical dilemmas. The objective of this review was to seek a probable consensus among the authors regarding these topics not yet fully defined. Method: An exploratory search was made in secondary sources, from 1990 to 2016, regarding palliative sedation and its clinical and bioethical implications. Conclusions: Palliative sedation is an alternative to alleviate end-of-life patient suffering due to refractory symptoms, particularly dyspnea and delirium, after all other treatment options have been exhausted. Decision making involves prior explanations, discussions and agreement of the team, patient, and/or family members. It can be performed in general hospital units, hospices and even at home. Midazolam is the most indicated drug, and neuroleptics may also be required in the presence of delirium. These patients' monitoring is limited to comfort observation, relief of symptoms, and presence of adverse effects. There is no consensus on whether or not to suspend fluid and nutritional support, and the decision must be made with family members. From the bioethical standpoint, the great majority of authors are based on intention and proportionality to distinguish between palliative sedation, euthanasia, or assisted suicide.

Resumo Justificativa e objetivo: Sedação paliativa é um procedimento médico que tem sido empregado há mais de 25 anos com a finalidade de aliviar sintomas refratários que não respondem a tratamento anterior em pacientes sem possibilidade de cura e próximos do fim da vida. Muitas incertezas persistem sobre o tema no que diz respeito à definição, às indicações, à tomada de decisão, ao local mais adequado para fazer o procedimento, aos fármacos mais usados, à necessidade de monitoração, ao apoio hídrico e nutricional e aos possíveis dilemas éticos. O objetivo desta revisão foi o de buscar um provável consenso entre os autores em relação a esses tópicos ainda não totalmente definidos. Método: Foi feita uma pesquisa exploratória em fontes secundárias, a partir de 1990 até 2016, a respeito de sedação paliativa e suas implicações clínicas e bioéticas. Conclusões: A sedação paliativa é uma opção para aliviar sofrimento de pacientes no fim da vida, devido a sintomas refratários, especialmente dispneia e delirium, após terem sido esgotadas todas as outras opções de tratamento. A tomada de decisão envolve explicações prévias, discussões e concordância da equipe, pacientes e ou parentes. Pode ser feita em unidades hospitalares gerais ou de retarguarda e mesmo no domicílio. Midazolam é o fármaco mais indicado, podendo ser necessários também neurolépticos na presença de delirium. A monitoração desses pacientes se resume apenas à observação do conforto, do alívio dos sintomas e da presença de efeitos adversos. Não existe consenso em suspender ou não o apoio hídrico e nutricional; a decisão deve ser tomada junto aos parentes. Do ponto de vista bioético, a grande maioria dos autores se fundamenta na intenção e na proporcionalidade para fazer a distinção entre sedação paliativa, eutanásia ou suicídio assistido.

Percepção de enfermeira(o)s frente ao paciente oncológico em fase terminal / Perception of nurses in relation to oncology patient in terminal phase / Percepción del enfermero frente al paciente oncológico en fase terminal

Enfermeira(o) que atua junto a paciente oncológico em fase terminal precisa saber vivenciar a proximidade da morte, etapa do processo de desenvolvimento do ser, de modo que possa promover cuidados amplos e singulares para amenizar e transformar o processo vital, controlando o sofrimento. O estudo teve como objetivo analisar a percepção de enfermeira(o)s que atuam com pacientes oncológicos em fase terminal e as estratégias de cuidados adotados. Trata-se de pesquisa qualitativa, exploratória e descritiva, desenvolvida em agosto de 2011, com 11 enfermeira(o)s de um hospital de Porto Alegre (RS). Para a coleta dos dados, recorreu-se à entrevista semiestruturada. Identificaram-se duas categorias: sentimentos de enfermeira(o)s diante da terminalidade do paciente oncológico e estratégias de cuidados adotadas. Os resultados apontaram que as/os enfermeira(o)s são sensíveis às situações da terminalidade oncológica; embora possam sentir-se despreparados, buscam valorizar aspectos espirituais e a importância da inserção da família nesse processo. Concluiu-se que o envolvimento emocional de enfermeira(o)s tem repercussão ora positiva, ora negativa, dependendo do contexto abordado.

Nurses working with oncological patients in terminal phase need to experience the proximity to death, in order to be able to promote ample and singular care to mitigate the suffering. The study had the aim of understanding the perception of nurses working with oncological patients in a terminal phase and the adopted strategies for health care. This is a qualitative, exploratory and descriptive research, developed in August 2001, with 11 nurses of a hospital in Porto Alegre (RS). Semi-structured interviews were used for data collection. Two categories were identified: sentiments of nurses in the face of the terminality of oncological patients and health care strategies adopted. The results point out that nurses are sensitive to situations of oncological terminality; although they may feel unprepared; they aim to value spiritual aspects and the importance of the insertion of the family in this process. It was concluded that the emotional involvement of nurses has sometimes positive and sometimes negative repercussions, depending on the context.

Enfermero(a) que actúa junto a paciente oncológico en fase terminal necesita saber vivenciar la proximidad de la muerte, para promover cuidados amplios y singulares para amenizar y transformar el sufrimiento. El estudio tuvo como objeto conocer la percepción de enfermero(a)s que actúan con pacientes oncológicos en fase terminal y las estrategias de cuidados adoptados. Se trata de una pesquisa cualitativa, exploratoria y descriptiva, desarrollada en agosto de 2011, con 11 enfermeros de un hospital de Porto Alegre/RS. Para la colecta de datos, se utilizó entrevistas semiestructuradas. Se identificaron dos categorías: sentimientos de los enfermero(a)s ante la terminalidad del paciente oncológico y estrategias de cuidados adoptadas. Los resultados indicaron que los/las enfermero(a)s son sensibles a las situaciones de la terminalidad oncológica; aunque puedan sentirse sin preparo, buscan valorizar aspectos espirituales y la importancia de la inserción de la familia en este proceso. Se concluye que la involucración emocional de enfermero(a)s tiene repercusión a veces positiva, a veces negativa, dependiendo del contexto abordado.

Espiritualidade na iminência da morte: estratégia adotada para humanizar o cuidar em enfermagem / Spirituality in iminent death: strategy utilized to humanize care in nursing / Espiritualidad en la inminencia de la muerte: estrategia adoptada para humanizar el cuidar en enfermería

Objetivou-se investigar a compreensão de enfermeiros sobre conceitos de espiritualidade e de necessidades espirituais do paciente sem possibilidades terapêuticas. Pesquisa exploratória, com abordagem qualitativa, realizada com sete enfermeiros na unidade de terapia intensiva de um hospital público, da cidade de João Pessoa, Paraíba. Os dados foram coletados nas entrevistas gravadas, entre dezembro de 2011 e janeiro de 2012, e tratados qualitativamente mediante a técnica de análise de conteúdo. As categorias emergidas do material empírico foram: espiritualidade na visão de enfermeiros; e necessidades espirituais dos pacientes sem possibilidades terapêuticas: compreensão de enfermeiros. Tais categorias afirmaram que, a partir da compreensão da dimensão espiritual, passam a valorizá-la na prática clínica, ajudando o paciente a enfrentar melhor o processo de terminalidade. Destarte, espera-se que esta pesquisa possa subsidiar novas investigações, porquanto ainda são incipientes as pesquisas que abordam a espiritualidade na assistência ao paciente terminal.

It is objectified to investigate the comprehension of nurses of concepts of spirituality and spiritual necessities of patients without therapeutics possibilities. Exploratory research with qualitative approach performed with seven nurses in the intensive care unit of a public hospital, in the city of João Pessoa, Paraíba. Data were collected in recorded interviews, between December 2011 and January 2012, and analyzed qualitatively by the technique of content analysis. The categories emerged from the empirical material were: spirituality in the view of nurses and spiritual necessities of patients without therapeutic possibilities: nurses’ comprehension. These categories indicated that, from the comprehension, of the spiritual dimension, they start to give value to it in clinical practice, helping the patient to face in a better way the process of terminality. Thus, it is hoped that this research can support new investigation, because they are still incipient those ones which discuss spirituality in care for the terminally ill patient.

Se objetivó investigar la comprensión de enfermeros sobre conceptos de espiritualidad y de necesidades espirituales del paciente sin posibilidades terapéuticas. Investigación exploratoria con abordaje cualitativo, realizada con siete enfermeros de launidad de cuidados intensivos de un hospital público de João Pessoa, Paraíba-Brasil. Los datos fueron recolectados en entrevistas grabadas, entre diciembre de 2011 y enero de 2012, y analizados cualitativamente mediante la técnica de análisis de contenido. Las categorías emergidas del material empírico fueron: espiritualidad desde la visión de enfermeros; y necesidades espirituales de los pacientes sin posibilidades terapéuticas: compressión de enfermeros. Estas categorías afirmaron que, a partir de la compressión de la dimensión espiritual, empiezan a valorarla en la práctica clínica, ayudando al paciente a enfrentar mejor el proceso terminal. De esta manera, se espera que esta investigación pueda subsidiar nuevas investigaciones, ya que aun son incipientes las investigaciones que abordan la espiritualidad em la asistencia al paciente terminal.

Uma releitura da obra de Elisabeth Kubler-Ross / A reappraisal of the works of Elisabeth Kubler-Ross

Este artigo apresenta uma releitura de parte da obra de Elizabeth Ross, uma das autoras mais citadas sobre a questão da terminalidade da vida, do luto e do morrer. Sua obra tem sido de grande contribuição tanto para os profissionais de saúde como para pais, mães, filhos, parentes, leigos e religiosos que vivenciam o luto. Também tem sido alvo de controvérsias relacionadas a questões éticas e quanto a seu rigor científico. Os livros aqui comentados são: On death and dying (Sobre A morte e o morrer, de 1969); Questions and answers on death and dying (Perguntas e respostas sobre a morte e o morrer, de 1971); Living with death and dying(Vivendo com a morte e os moribundos, de 1981); On children and death (Sobre as crianças e a morte, de 1983); On life after death (Sobre a vida depois da morte, de 1991) e Life lessons (Lições de vida, de 2000).

This article presents a reappraisal of part of the works of Elizabeth Kubler-Ross, one of the most quoted authors addressing the end of life process, mourning and dying. Her work has contributed to a clearer understanding of these issues by health professionals, families, religious and lay people who handle and/or experience mourning. She has also been the subject of controversy related to ethical issues and the scientific rigor of her work. The books analyzed in this article are: On death and dying (1969); Questions and answers on death and dying (1971); Living with death and dying (1981); On children and death(1983); On life after death (1991) and Life lessons (2000).

El principio del doble efecto en la sedación a pacientes terminales / The principle of double effect on sedation of terminally ill patients

Entre los 5 principios éticos en medicina paliativa, el del doble efecto o de razonamiento práctico no solo sirve para determinar la licitud o ilicitud de una acción y puede producir 2 efectos: uno bueno y otro malo, sino que es posible aplicarlo en los pacientes terminales, quienes suelen presentar dolor intenso, dificultad para respirar u otros síntomas que requieran la utilización de drogas como la morfina cuyo efecto podría generar hipotensión arterial o depresión respiratoria u otros fármacos que reducen el grado de vigilia o incluso privan al enfermo de su conciencia. En este artículo se revisa detenidamente el tema y el autor expone sus criterios al respecto. Se concluye que es ético sedar al paciente solo cuando el dolor ha sido refractario al tratamiento recomendado, que incluye diferentes terapéuticas neuroquirúrgicas. No se considera aceptable administrar morfina como intento primordial de lograr la muerte. El principio del doble efecto deviene un mal inevitable provocado por la prosecución impostergable de un bien. Este principio permite realizar una acción moralmente legítima, aun cuando de ella puedan derivarse efectos indeseables.

Among the 5 ethical principles in palliative medicine, that of the double effect or of practical reasoning is not only used to determine the licitness or illicitness of an action and can produce two effects: a good one and a bad one, but also it can be applied in terminally ill patients who usually have a severe pain, respiratory distress or other symptoms that require the use of drugs, such as morphine, which effect could lead to hypotension or respiratory depression, or other drugs that reduce the level of wakefulness or even deprive the patient of his consciousness. This paper carefully reviews the subject and the author presents his views on the matter. It is concluded that sedation of the patient is ethical only when the pain has been refractory to the treatment recommended, including different neurosurgical treatments. It is not considered acceptable to administer morphine as primary attempt to achieve death. The principle of double effect becomes unavoidable evil caused by the urgent pursuit of a good. This principle allows to perform a morally legitimate action, even when undesirable effects can be derived from it.

Sentimentos e percepções da equipe de saúde frente ao paciente terminal / Feelings and perceptions of health staff in front of the terminally ill patient

O atendimento a pacientes terminais pelas equipes de saúde, comprovadamente apontado por evidências na literatura, mostra a grande dificuldade que esses profissionais têm em lidar com o tema "morte". O presente estudo objetivou compreender como as equipes de saúde definem e vivenciam o paciente terminal. Para tanto, utilizou-se uma abordagem qualitativa que empregou a pesquisa etnográfica através de observação não-participativa, além de entrevistas semi-estruturadas nas unidades de hemato-oncologia e de infectologia de um hospital público. Os resultados certificaram as dificuldades por parte da equipe em lidar com pacientes terminais, bem como em defini-los como tais e comunicar aos mesmos a sua condição. Dessa forma, percebeu-se a intensa necessidade da realização de um trabalho direto com as equipes de saúde com o intuito de lhes proporcionar um espaço de reflexão e de entendimento, propiciando a continência das emoções suscitadas na equipe de saúde perante a situação da morte.

The care given to terminally ill patients by health staff, properly indicated in evidences of literature, shows the great difficulties that those professionals have in dealing with the death. This study intends to show how those professionals define and experience terminally ill patients. Thus, a qualitative approach was applied to ethnographic research through observations and semi-structured interviews were used in the hematology-oncology and infectology departments of a public hospital. Results attest to the difficulties on the part of health staffs in handling and defining terminally ill patients, as well as the difficult task of rendering those patiens aware of their terminal condition. That said, one realizes the need for a direct-contact approach with such health staffs intending to provide them time for reflection and understanding which favor some restraint in their emotions brought on in face of death situations.

Factors associated with the place of death in Korea; a population based study

BACKGROUND: In western countries the proportion of deaths in the hospital has somewhat decreased. While that of Korea has continuously increased, it is interesting things that the hospital death rate in Korea is less than that in western countries. Therefore we tried to find the factors associated with the place of death in Korea. METHODS: We obtained the data from the National Statistical Office. They are composed of address, occupation, cause of death, marital status, and level of education. Causes of death were classified by ICD 10. Univariate and Mutivariate analysis were done to find the effect of each variable for the place of death. RESULTS: Total number of the study population was 242,362 (male;136,063, female;106,299). Female died more in the hospital. The younger are more likely to die in the hospital. People having lived in metropolitan, having educated to higher level and professionals died more in the hospital. And the people having had ischemic heart disease and cancer death were more likely to die in the hospital. The single(unmarried, divorced) died more in the hospital. In multivariate analysis, the place of death was significantly different by sex, age, address, occupation, cause of death, and level of education. CONCLUSION: In Korea sex, age, address, occupation, cause of death, and level of education are helpful in predicting the palce of death.

The Study on the Medical and Nursing Service Needs of the Terminal Cancer Patients and Their Caregivers / 간호학회지

In this study, we attempted to investigate the needs and problems of the terminal cancer patients and their family caregivers to provide them with nursing information to improve their quality of life and prepare for a peaceful death. Data was collected from August 1, 1995 to July 31, 1996 at the internal medicine unit of S hospital in Seoul area with the two groups of participants who were family members of terminal cancer patients seventy four of them were in-patients and 34 were out-patients who were discharged from the same hospital for home care. The research tool used in this study has been developed by selecting the questionnaires from various references, modifying them for our purpose and refining then based on the results of preliminary study. While general background information about the patients was obtained by reviewing their medical records, all other information was collected by interviewing the primary family caregivers of the patients using the questionnaire. The data collected were analyzed with the SPSS PC+ program. The results of this study are summarized as follows; 1) Most frequently complained symptoms of the terminal cancer patients were in the order of pain(87%), weakness(86.1%), anorexia(83.3%) and fatigue(80.6%). 2) Main therapies for the terminal cancer patients were pain control(58.3%), hyperalimentation(47.2%) and antibiotics(21.3%). 3) Special medical devices that terminal cancer patients used most were oxygen device(11.1%), and feeding tube(5.6%). Other devices were used by less than 5% of the patents. 4) The mobility of 70.4% of the patients was worse than ECOG 3 level, they had to stay in bed more than 50% of a day. 5) Patients wanted their medical staffs to help relieve pain(45.4%), various physical symptoms(29.6%), and problems associated with their emotion(11.1%). 6) 16.7% of the family caregivers hoped for full recovery of the patients, refusing to admit the status of the patients. also, 37% wished for the extension of the patient's life at least for 6 months. 7) Only 38.9% of the family members was preparing for the patient's funeral. 8) 45.4% of family caregivers prefer hospital as the place for the patient's death, 39.8% their own home, and 14.8% undetermined. 9) caregivers of the patients were mostly close family members, i.e., spouse(62%), and sons and daughters or daughter-in-laws(21.3%). 10) 43.5% of the family caregivers were aware of hospice care. 46.8% of them learned about the hospice care from the mass media, 27.7% from health professionals, and the rest from books and other sources. 11) Caregivers were asked about the most difficult problems they encounter in home care, 41 of them pointed out the lack of health professionals they can contact, counsel and get help from in case of emergency, 17 identified the difficulty of finding appropriate transportation to hospital, and 13 stated the difficulty of admission in hospital as needed. 12) 93.6% of family caregivers demanded 24-hour hot line, 80% the visiting nurses and doctors, and 69.4% the volunteer's help. The above results indicate that terminal patients and their family caregivers demand help from qualified health professionals whenever necessary. Hospice care system led by well-trained medical and nursing staffs is one of the viable answers for such demands.