Ethics and Medicolegal Aspects of Withdrawal of Treatment in Critical Care Patients without Advanced Directives in India: Who will Guard the Guardians Themselves?

The Supreme Court (SC) verdict of 2023 has been welcomed by the medical community in India by those who treat patients with terminal or advanced illnesses. The earlier verdict of the apex court in 2018 was ground-breaking in allowing for advanced directives (ADs) by patients in terms of their preferences at the end of life. However, it was an impractical and lengthy process in the Indian context. The recent verdict has simplified the process of withdrawal of life support, making it more practical. The authority to withdraw life support in dying patients is now also with the treating physician, the hospital, the primary medical board, and the secondary board. This article examines ethical issues related to the specifics of the judgment with respect to those who do not have ADs in India. The present article emphasizes the need for self-regulation, credentialing, and continuing medical education in critical care and palliative medicine. In the absence of these, who will guard the guardians? How to cite this article: Menon MR. Ethics and Medicolegal Aspects of Withdrawal of Treatment in Critical Care Patients without Advanced Directives in India: Who will Guard the Guardians Themselves? Indian J Crit Care Med 2024;28(1):15-17.

A Nationwide Survey on the Practice of End-of-life Care Issues in Critical Care Units in India.

Background: End-of-life (EOL) care is the care of terminally ill patients who are nearing their end. It includes important components like palliative care, supportive care, hospice care, patient's right to choose, and choice of medical intervention, including continuation of routine medical interventions. The aim of this survey was to assess the practices of EOL care in various critical care units in India. Methods: The participants included clinicians involved in EOL care of patients with advanced diseases in different hospital across India. We sent blast emails and posted links on social media for inviting participants to take the survey. Study data were collected and managed by using Google Forms. The collected information was automatically entered into a spread sheet and stored in a secure database. Results: In total, 91 clinicians took the survey. The years of experience, practice area, and setting had significant effect on the palliative care, terminal strategy, and prognostication in terminally ill patients (p < 0.05). Statistical analysis was done using software STATA. Descriptive statistics were performed, and results were presented as number (percentage). Conclusion: The years of work experience, the practice area, and the practice setting have a strong impact on EOL care management of terminally ill patients. There are a lot of gaps in providing EOL care for these patients. Many reforms are needed in the Indian health care system to make EOL care better. How to cite this article: Kapoor I, Prabhakar H, Mahajan C, Zirpe KG, Tripathy S, Wanchoo J, et al. A Nationwide Survey on the Practice of End-of-life Care Issues in Critical Care Units in India. Indian J Crit Care Med 2023;27(5):305-314.

Dignity at the end of life: from philosophy to health care practice - Lithuanian case.

Regulation and clinical practices regarding end of human life care differ among the nations and countries. These differences reflect the history of the development of state health systems, different societal values, and different understandings of dignity and what it means to protect or respect dignity. The result is variation in the ethical, legal, and practical approaches to end-of-life issues. The article analyzes the diversity of strategies to strengthen dignity at the end of life of terminally ill patients and to highlight the legal preconditions and limitations for implementing these strategies in independent Lithuania, as a former state of the Soviet Union. It is based on the critical analysis of philosophical literature, legal national and international documents and scientific evidence related to the issue. The author argues that the legal system in Lithuania is not sufficient to ensure the patient's dignity at the end of life and remains far behind other Western European countries. Legal regulations in Lithuania do not guarantee the right of the patient to express his or her will regarding the future treatment, including the refusal of resuscitation, do not regulate the termination of burdensome, non-viable and meaningless treatment that is undesired by the patient, and limit the accessibility of palliative care with its necessary quality and comfort.

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)

Mental Adjustment as a Predictor of Comprehensive Quality of Life Outcome among Patients with Terminal Cancer.

Using path modeling, this study aimed to explore whether mental adjustment was directly or indirectly related to comprehensive quality of life outcome (CoQoLO) among patients with terminal cancer. We conducted a cross-sectional designed study among patients with terminal cancer who underwent convenience sampling at our northern Taiwan clinic from August 2019 to August 2020. Patient characteristics data were collected via structured questionnaires, namely, the Mini-Mental Adjustment to Cancer Scale and the Comprehensive Quality of Life Outcome Inventory. Descriptive statistics and regression analyses were used to examine the relationship between mental adjustment and CoQoLO. Path analysis described the dependencies among variables. For the 117 enrolled patients analyzed, MAC (ß = 1.2, 95% confidence interval (CI) = 0.8-1.6, p < 0.001) and living with others (ß = 19.9, 95% CI = 4.1-35.7, p = 0.015) were significant predictors and correlated positively with a CoQoLO score. Path modeling showed that the patients' mental adjustment, economic status, perceived disease severity, palliative prognostic index, and symptom severity directly affected their CoQoLO. Our results indicate that the higher the mental adjustment, the better the CoQoLO among patients with terminal cancer. Thus, nurses need to assess mental adjustment levels when patients are hospitalized and accordingly develop interventions to improve the terminally ill patients' mental adjustment to the final stages of cancer, thereby helping them to achieve good CoQoLO.

Effectiveness of palliative care consultation service on caregiver burden over time between terminally ill cancer and non-cancer family caregivers.

PURPOSE: The responsibility of taking care of terminal patients is accepted as a role of family members in Taiwan. Only a few studies have focused on the effect of palliative care consultation service (PCCS) on caregiver burden between terminal cancer family caregivers (CFCs) and non-cancer family caregivers (NCFCs). Therefore, the purpose of this study is to address the effect of PCCS on caregiver burden between CFC and NCFC over time. METHODS: A prospective longitudinal study was conducted in a medical center in northern Taiwan from July to November 2017. The participants were both terminally ill cancer and non-cancer patients who were prepared to receive PCCS, as well as their family caregivers. Characteristics including family caregivers and terminal patients and Family Caregiver Burden Scale (FCBS) were recorded pre-, 7, and 14 days following PCCS. A generalized estimating equation model was used to analyze the change in the level of family caregiver burden (FCB) between CFC and NCFC. RESULTS: The study revealed that there were no statistically significant differences in FCB between CFC and NCFC 7 days and 14 days after PCCS (p > 0.05). However, FCB significantly decreased in both CFC and NCFC from pre-PCCS to 14 days after PCCS (ß = - 12.67, p = 0.013). PPI of patients was the key predictor of FCB over time following PCCS (ß = 1.14, p = 0.013). CONCLUSIONS: This study showed that PCCS can improve FCB in not only CFC but also NCFC. We suggest that PCCS should be used more widely in supporting family caregivers of terminally ill patients to reduce caregiver burden.

Facing Death in Medical Training: A View From Students in Mexico.

This study explores how medical students feel about caring for terminally ill patients as well as how their medical courses prepare them for addressing end-of-life (EOL) issues with patients. Four hundred and five Mexican medical students were surveyed through the Student Views on Death questionnaire. The vast majority of students (94%) felt that physicians should inform patients of their impending death. Most students said they felt comfortable talking with (61%) or examining (76%) terminally ill patients. However, only half the students actually talked with patients about death. Participants in our study were interested in learning about EOL medical attention, yet most considered themselves poorly prepared to offer this type of care to terminally ill patients. The study provides objective data on a topic that has scarcely been explored in Mexico, data that will be useful in designing educational activities to improve EOL medical training.

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.

Japanese physicians' experiences of terminally ill patients voluntarily stopping eating and drinking: a national survey.

OBJECTIVES: Voluntarily stopping eating and drinking (VSED) could be regarded as a patients' own non-treatment decision that hastens death, which involves patients voluntarily forgoing food and liquid until death. The aims of this study were to investigate the experience of home hospice physicians and palliative care specialists who care for patients during VSED in Japan, and their opinions on continuous deep sedation (CDS) as a means to relieve patient symptoms during VSED. METHODS: 219 home hospice physicians and 695 palliative care specialists across Japan were surveyed by mail questionnaire in 2016. RESULTS: A total of 571 (62%) responses were analysed. A total of 185 (32%) had experience of patients who selected VSED. In response to questions about CDS to provide relief to patients during VSED, the number of physicians who replied that CDS was acceptable was 88 (15%). CONCLUSIONS: In Japan, 32% of physicians surveyed replied that they had experience of caring for patients during VSED in a clinical setting and 15% considered CDS acceptable.

[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.

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.

Psychometric testing of the Spiritual Well-Being Scale-Mandarin version in Taiwanese cancer patients.

OBJECTIVE: The spiritual well-being of terminally ill cancer patients is an important indicator of the quality of their lives and of the quality of hospice care, but no validated tools are available for assessing this indicator in Taiwan. METHOD: The present cross-sectional study validated the Spiritual Well-Being Scale-Mandarin version (SWBS-M) by testing its psychometric properties in 243 cancer patients from five teaching hospitals throughout Taiwan. Construct validity was tested by factor analysis and hypothesis testing. Patients' spiritual well-being and quality of life were assessed using the SWBS-M and the McGill Quality of Life Questionnaire (MQoL), respectively. RESULTS: Overall, the SWBS-M had an internal consistency/reliability of 0.89. Exploratory factor analysis showed that the SWBS-M had an underlying two-factor structure, explaining 46.94% of the variance. SWBS-M scores correlated moderately with MQoL scores (r = 0.48, p < 0.01). Terminally ill cancer patients' spiritual well-being was inversely related to their average pain level during the previous 24 hours (r = -0.183, p = 0.006). Cancer patients' spiritual well-being also differed significantly with their experience of pain (t = -3.67, p < 0.001); terminally ill cancer patients with pain during the previous 24 hours had a lower sense of spiritual well-being than those without pain. SIGNIFICANCE OF RESULTS: Our findings support a two-factor model for the SWBS-M in terminally ill Taiwanese cancer patients. We recommend testing the psychometric properties of the SWBS-M in different patient populations to verify its factorial structure in other Asian countries.

The Prevalence of Neuropathic Pain in Terminally Ill Patients With Cancer Admitted to a Palliative Care Unit: A Prospective Observational Study.

OBJECTIVE: The primary aim of this study was to determine the prevalence of neuropathic pain (NP) in patients with cancer receiving palliative care. METHODS: In this prospective observational study, terminally ill patients with cancer having NP were identified by a pain management clinician using the diagnostic algorithm of NP from the International Association for the Study of Pain on the day of admission. RESULTS: A total of 220 patients who were hospitalized in the palliative care unit were enrolled in this study. The median survival times were 21.5 days (range, 0-173 days), and 57.7% of patients were male. Among the 220 patients, 41 (18.6%; 95% confidence interval, 13.5%-23.8%) developed NP. CONCLUSION: The prevalence of NP in terminally ill patients with cancer in Japanese palliative care units was 18.6%.

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.

A Dor no doente terminal: intervenção do enfermeiro / Pain in the terminally ill patient: nurse intervention

A dor é uma experiência pessoal, influenciada por vários fatores em que a perceção sensorial e emocional acrescenta dificuldades na sua avaliação. A avaliação e o controlo da dor é um dever do enfermeiro e tem como objetivos proporcionar conforto, dignidade e qualidade de vida. A sua intervenção na vigilância da dor é fundamental pois é capaz de prever um evento doloroso intervindo com estratégias que aliviem ou reduzam a dor para níveis considerados aceitáveis para a pessoa. Este estudo teve por finalidade contribuir para um conhecimento aprofundado sobre as estratégias e recursos, utilizadas pelos enfermeiros, na avaliação e controlo da dor no doente terminal e como objetivos identificar as boas práticas e as estratégias utilizadas pelos enfermeiros, na avaliação e no controlo da dor no doente terminal. Trata-se de um estudo de nível 1 exploratório descritivo no qual estiveram envolvidos 18 enfermeiros dum serviço de medicina; realizadas 18 entrevistas semi-estruturadas; 36 observações não participadas das passagens de turno e 36 análises documentais aos registos de enfermagem. Dos resultados das entrevistas realça-se que os enfermeiros utilizam como estratégias para a avaliação da dor a observação do doente, identificação de sinais somáticos e a utilização de escalas de avaliação. Para o controlo da dor utilizam medidas farmacológicas e não farmacológicas. Das passagens de turno sobressai que os enfermeiros apesar de fazerem referência ao fenómeno dor, não mencionam a estratégia utilizada na sua avaliação e nem sempre referem a estratégia utilizada no controlo da dor. Da consulta dos registos, verifica-se que apenas é registado a utilização das escalas da face ou numérica e que aplicam as intervenções físicas como o posicionamento e a massagem assim como a administração de medicação em SOS. Verificou-se ainda que o registo da avaliação da dor no doente terminal se encontra limitado aos doentes conscientes e orientados, ficando por esclarecer como é registada a avaliação da dor nos doentes inconscientes e sem resposta verbal. Este trabalho tem implicações para a prática dos cuidados, para a investigação e a formação, sendo que os resultados vêm reforçar a importância dos registos de enfermagem completos e a reflexão sobre da avaliação da dor nos doentes inconscientes ou sem resposta verbal.

The assessment and management of pain is not only a duty of the nurse but it also aims to provide comfort, dignity and quality of life. Its involvement in the monitoring of pain is essential since it can predict a painful event intervened with strategies to relieve or reduce pain to acceptable levels for the person. This study aims to contribute to a deeper understanding of the strategies and resources used by nurses in the assessment and management of pain in terminal patients as well as to identify the best practices and strategies. It is a level 1 study, exploratory and descriptive, in which 18 nurses of a medical service were involved; 18 semi-structured interviews were conducted, there was 36 observations not participated shift changes and 36 documentary analyzes of nurses' records. In the results of the interviews it is noted that nurses use as strategies for assessing pain the observation of the patient, identification of somatic signs and the use of rating scales. To control pain they use pharmacological and non-pharmacological measures.From the nurses' Shift changes stand that, despite making reference to the phenomenon pain, the nurses do not mention the strategy used in their evaluation and do not always refer the strategy used for pain management. From the consultation of the records, it appears that it is only recorded the use of the scales of the face or numerical and it is applied physical interventions such as positioning and massage as well as administration of medication in SOS. It was also found that the record of the assessment of pain in terminall patients is limited to patients conscious and oriented, not being clear how is recorded the assessment of pain in unconscious and no verbal response patients. This work has implications not only for nursing practice, but also for research and training, since the results reinforce the importance of complete nursing records and reflection on the assessment of pain in unconscious or no verbal response patients.

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.