The dignity of terminally ill children in pediatric palliative care: perspectives of parents and healthcare providers.

BACKGROUND: The Chochinov Dignity Model was developed based on a cohort of adult patients with advanced cancer, but its role among dying children is not clear. This study aims to develop a model of dignity for children receiving pediatric palliative care based on the Chochinov Dignity Model. METHODS: This is a descriptive qualitative study. Participants included a total of 11 parents and 14 healthcare providers who were recruited from a tertiary children's hospital in Beijing and the Pediatric Palliative Care Subspecialty Group of the Pediatrics Society of the Chinese Medical Association using purposive sampling. Thematic framework analysis was used to analyze data. RESULTS: The themes of the empirical Dignity Model were broadly supported in this study, but some themes were interpreted differently in the child population. Compared with the original model, some child-specific themes were identified including acknowledging regret, a sense of security, the company of important loved ones, realizing unfinished wishes, decent and dignified death, resolving family disputes, and fairness. CONCLUSIONS: This is the first study on Dignity Model for terminal children. Knowledge of children's dignity can promote reflection of healthcare providers and caregivers regarding the values underlying their performance in pediatric palliative care, and develop certain practical interventions to strengthen children and their families' sense of dignity at end of life.

[Development and Validation of a Dignity in Care Scale of Terminally Ill Patients for Nurses].

PURPOSE: This study aimed to develop an instrument to showcase Dignity in Care of Terminally Ill Patients for Nurses and to examine its validity and reliability. METHODS: A total of 58 preliminary items on dignity in care of terminally ill patients for nurses were selected using content validity analysis and expert opinions on 97 candidate items derived through a literature review and qualitative focus group interviews. Questionnaires were administered to 502 nurses caring for terminally ill cancer patients at hospice and palliative care institutions. The data were analyzed using item analysis, exploratory and confirmatory factor analysis, convergent and discriminant validity, and Pearson correlation for criterion validity, reliability was tested using Cronbach's alpha. RESULTS: The final instrument consisted of 25 items, with four factors identified through confirmatory factor analysis. Four factors-ethical values and moral attitudes, interaction-based communication, maintaining comfort, professional insight and competence-accounted for 61.8% of the total variance. Cronbach's α for total items was .96, and test-retest reliability of intraclass correlation coefficient was .90. CONCLUSION: Since its validity and reliability have been verified through various methods, the Dignity in Care Scale of Terminally Ill Patients for Nurses can be used for develop nursing interventions and improve dignity in care of terminally ill patients.

Specialty Differences in Medical Aid in Dying Experiences: Results of a Survey of Physicians in Colorado.

In Colorado, medical aid in dying (MAiD) is legal, allowing a terminally ill person to request a prescription and self-administer a medication to end their life. Such requests are granted under certain circumstances, including a malignant neoplasm diagnosis, with a goal of peaceful death. This study examined differences in attitudes and actual participation in MAiD between oncologists and non-oncologists, using data from a recent survey of physicians regarding MAiD.

Paediatric palliative care for the generalist.

Palliative care has been defined as 'the active holistic care of individuals across all ages with serious health-related suffering due to severe illness, and especially of those near the end of life'. Unfortunately, palliative care and especially paediatric palliative care remain a neglected area of medicine and are widely misunderstood, with few healthcare providers having any formal training in South Africa. To relieve health-related suffering, healthcare providers must understand that the field is not limited to end-of-life care for the terminally ill, and holistic care (physical, emotional, social and spiritual) should commence at the time of diagnosis of a serious illness. It is imperative that all healthcare providers develop the knowledge and skills to provide this essential care across all levels of care and disciplines. The article aims to raise awareness and show how to practically implement palliative care through case studies.

Continuous palliative sedation in terminally ill patients with cancer: a retrospective observational cohort study from a Chinese palliative care unit.

OBJECTIVE: This study aimed to describe a 4-year practice of continuous palliative sedation (CPS) in a palliative medicine ward of an academic hospital in China. To compare the survival time of patients with cancer with and without CPS during end-of-life care, we used the propensity score matching method and explored potential patient-related factors. DESIGN: A retrospective observational cohort study. SETTING: The palliative ward at a tertiary teaching hospital between January 2018 and 10 May 2022, in Chengdu, Sichuan, China. PARTICIPANTS: The palliative care unit had 1445 deaths. We excluded 283 patients who were sedated on admission due to mechanical ventilation or non-invasive ventilators, 122 patients who were sedated due to epilepsy and sleep disorders, 69 patients without cancer, 26 patients who were younger than 18 years, 435 patients with end-of-life intervention when the patients' vital signs were unstable and 5 patients with unavailable medical records. Finally, we included 505 patients with cancer who met our requirements. MAIN OUTCOME MEASURES: The survival time and analysis of sedation potential factors between the two groups were compared. RESULTS: The total prevalence of CPS was 39.7%. Patients who were sedated more commonly experienced delirium, dyspnoea, refractory existential or psychological distress, and pain. After propensity score matching, the median survival was 10 (IQR: 5-17.75) and 9 days (IQR: 4-16) with and without CPS, respectively. After matching, the two survival curves of the sedated and non-sedated groups were no different (HR 0.82; 95% CI 0.64 to 0.84; log-rank p=0.10). CONCLUSIONS: Developing countries also practise palliative sedation. Median survival was not different between patients who were and were not sedated.

Factors associated with cancer patients' distinct death-preparedness states.

BACKGROUND/OBJECTIVE: Facilitating death preparedness is important for improving cancer patients' quality of death and dying. We aimed to identify factors associated with the four death-preparedness states (no-preparedness, cognitive-only, emotional-only, and sufficient-preparedness) focusing on modifiable factors. METHODS: In this cohort study, we identified factors associated with 314 Taiwanese cancer patients' death-preparedness states from time-invariant socio-demographics and lagged time-varying modifiable variables, including disease burden, physician prognostic disclosure, patient-family communication on end-of-life (EOL) issues, and perceived social support using hierarchical generalized linear modeling. RESULTS: Patients who were male, older, without financial hardship to make ends meet, and suffered lower symptom distress were more likely to be in the emotional-only and sufficient-preparedness states than the no-death-preparedness-state. Younger age (adjusted odds ratio [95% confidence interval] = 0.95 [0.91, 0.99] per year increase in age) and greater functional dependency (1.05 [1.00, 1.11]) were associated with being in the cognitive-only state. Physician prognostic disclosure increased the likelihood of being in the cognitive-only (51.51 [14.01, 189.36]) and sufficient-preparedness (47.42 [10.93, 205.79]) states, whereas higher patient-family communication on EOL issues reduced likelihood for the emotional-only state (0.38 [0.21, 0.69]). Higher perceived social support reduced the likelihood of cognitive-only (0.94 [0.91, 0.98]) but increased the chance of emotional-only (1.09 [1.05, 1.14]) state membership. CONCLUSIONS: Death-preparedness states are associated with patients' socio-demographics, disease burden, physician prognostic disclosure, patient-family communication on EOL issues, and perceived social support. Providing accurate prognostic disclosure, adequately managing symptom distress, supporting those with higher functional dependence, promoting empathetic patient-family communication on EOL issues, and enhancing perceived social support may facilitate death preparedness.

En busca del buen morir / In search of a good death

La muerte siempre ha generado desconcierto, por lo que acompañar en este proceso de final de vida conlleva un alto compromiso existencial. Si a esta difícil tarea se le agregan los condicionantes hospitalarios o legales que sufren los enfermos en su agonía, estamos ante una muerte aterradora, muy distante de una partida que pueda ser considerada amorosa. Como sabemos, la palabra "clínica" hace referencia a la práctica de atender al pie de la cama del paciente, aliviando el dolor del que está por partir; sin embargo, el "corsé legal" de la muerte está alejando al médico de aquel que debiera recibir toda su atención y sus cuidados, atándole el brazo para acompañarlo en el buen morir. Deberíamos debatir y acordar una estrategia que enriquezca la experiencia del momento final de la vida, de modo que ese conjunto acotado de pacientes pueda elegir su forma de partir. Es de un valor incalculable despertar la compasión en este tema tan importante que preocupa al ser humano desde los inicios de la civilización. Sería muy fructífero que aprovechemos la transmisión de sabiduría de siglos de antiguas culturas que han sabido cuidar con humildad la vida hasta el instante de morir. (AU)

Death has always implied confusion, so accompanying this end-of-life process entails a highexistential commitment. If we add to this difficult task the hospital or legal constraints suffered bypatients in their agony, we are facing a terrifying death, very far from a departure that can be considered a loving one. As we know, the word "clinical" refers to the practice of caring for the patient very close to the bed, alleviating the pain of whom is about to leave; however, the "legal corset" of death is separating the doctor from the one who should receive all his attention and care, preventing him from accompanying the pacient in his/her good dying. We should discuss and agree on a strategy that enriches the experience of the end of life, so that patients could choose the way to leave. It is of incalculable value to awaken compassion on this important issue that has concerned human since the beggining of civilization. It would be very fruitful if we take advantage of the enormous wisdom of ancient cultures that have humbly cared for life until the moment of death. (AU)

Use and impact of a novel nurse-led consultation model in a palliative care consultation service for terminally ill cancer patients in Taiwan: an 11-year observational study.

PURPOSE: The early integration of palliative care for terminally ill cancer patients improves quality of life. We have developed a new nurse-led consultation model for use in a palliative care consultation service (PCCS) to initiate early palliative care for cancer patients. METHODS: In this 11-year observational study, data were collected from the Hospice-Palliative Clinical Database (HPCD) of Taichung Veterans General Hospital (TCVGH). Terminally ill cancer patients who had received PCCS during the years 2011 to 2021 were enrolled. Trend analysis was performed in order to evaluate differences in outcomes seen within the categories of either a nurse-led consultation model or ordinary consultation model throughout the study period. Analysis included studying the duration of PCCS and DNR declaration, as well as awareness of disease by both patients and families before and after PCCS. RESULTS: In total, 6923 cancer patients with an average age of 64.1 years received PCCS from 2011 to 2021, with the average duration of PCCS being 11.1 days. Three thousand four hundred twenty-one patients (49.4%) received both a nurse consultation and doctor consultation during PCCS. Being admitted to the Department of Hematology, a longer duration of hospitalization, a DNR declaration after PCCS, and having had a PCCS consultation by a nurse only or both with a nurse and a doctor were significant determinants of a PCCS duration of more than 7 days. CONCLUSION: This 11-year observational study shows that the number of terminal cancer patients receiving a novel nurse-led consultation during PCCS has increased significantly during the past decade, while a nurse-led consultation model during PCCS was effective in improving the duration of PCCS among terminally ill cancer patients.

Effect of a single dose of intravenous ketamine on the wish to hasten death in palliative care: A case report in advanced cancer.

OBJECTIVES: The suffering experienced by some patients at the end of their lives can lead to a wish to hasten death (WTHD). It is sometimes an existential suffering, refractory to palliative care even if well conducted, which leads to this desire. Since several years, in psychiatry, the rapid anti-suicidal effects of a single injection of ketamine have been proven. WTHD and suicidal ideation have similarities. The injection of a single dose of ketamine could have an efficiency on the desire to hasten death. METHODS: We report the case of a woman with advanced breast cancer expressing a WTHD, treated by ketamine. RESULTS: A 78-year-old woman expressed a WTHD (request for euthanasia) because of existential suffering following a loss of autonomy related to cancer. The suicide item was 4 on the Montgomery-Åsberg Depression Rating Scale (MADRS). She had no associated pain or depression. A single dose of intravenous ketamine 1 mg/kg over 40 min plus 1 mg of midazolam was injected. She had no adverse effects. From D1 post-injection to D3, the WTHD disappeared completely with a MADRS suicide item at 0. At D5, the WTHD started to reappear, and at D6, the previous speech was completely back. SIGNIFICANCE OF THE RESULTS: These results suggest an effect of ketamine on WTHD. This opens up the possibility of treating existential suffering at the end of life. The optimal dosage of this treatment would have to be determined as well as a maintenance of efficacy scheme.

Associations of prognostic-awareness-transition patterns with emotional distress and quality of life during terminally ill cancer patients' last 6 months of life.

OBJECTIVE: Unprecedently investigate associations of prognostic-awareness-transition patterns with (changes in) depressive symptoms, anxiety symptoms, and quality of life (QOL) during cancer patients' last 6 months. METHODS: In this secondary analysis study, 334 cancer patients in their last 6 months transitioned between four prognostic-awareness states (unknown and not wanting to know, unknown but wanting to know, inaccurate awareness, and accurate awareness), thus constituting three transition patterns: maintaining-accurate-, gaining-accurate-, and maintaining-inaccurate/unknown prognostic awareness. A multivariate hierarchical linear model evaluated associations of the transition patterns with depressive symptoms, anxiety symptoms, and QOL determined at final assessment and by mean difference between the first and last assessment. RESULTS: At the last assessment before death, the gaining-accurate-prognostic-awareness group reported higher levels of depressive symptoms (estimate [95% confidence interval] = 1.59 [0.35-2.84]) and the maintaining- and gaining-accurate-prognostic-awareness groups suffered more anxiety symptoms (1.50 [0.44-2.56]; 1.42 [0.13-2.71], respectively) and poorer QOL (-7.07 [-12.61 to 1.54]; -11.06 [-17.76 to -4.35], respectively) than the maintaining-inaccurate/unknown-prognostic-awareness group. Between the first and last assessment, the maintaining- and gaining-accurate-prognostic-awareness groups' depressive symptoms (1.59 [0.33-2.85]; 3.30 [1.78-4.82], respectively) and QOL (-5.04 [-9.89 to -0.19]; -8.86 [-14.74 to -2.98], respectively) worsened more than the maintaining-inaccurate/unknown-prognostic-awareness group, and the gaining-accurate-prognostic-awareness group's depressive symptoms increased more than the maintaining-accurate-prognostic-awareness group (1.71 [0.42-3.00]). CONCLUSIONS: Unexpectedly, patients who maintained/gained accurate prognostic awareness suffered more depression, anxiety, and poorer QOL at end of life. Promoting accurate prognostic awareness earlier in the terminal-cancer trajectory should be supplemented with adequate psychological care to alleviate patients' emotional distress and enhance QOL. TRIAL REGISTRATION: ClinicalTrials.gov:NCT01912846.

Clinical Prognostic Factors During the Last One Month of Life in Terminally Ill Cancer Patients: A Retrospective Observational Study.

OBJECTIVE: To explore the trajectory of clinical symptoms and biomarkers in the last four weeks of life in terminally ill cancer patients. STUDY DESIGN: Observational study. PLACE AND DURATION OF STUDY: Department of Oncology, Shijingshan hospital, Shijingshan Teaching Hospital of Capital Medical University, Beijing, China, between January 2017 and January 2020. METHODOLOGY: This study evaluated 173 terminally ill cancer patients. Seventeen symptoms and fifteen biomarkers were identified. For sequential analysis, the authors divided the final four weeks of life into four time periods from the date of death. Ordinal multiple logistic regression analysis was used to explore the association between the changes in clinical parameters and the risk of death in a given period. Changes in clinical parameters across different time periods were evaluated using the Wilcoxon signed rank test. RESULTS: Abnormal consciousness; elevated ECOG (Eastern Cooperative Oncology Group) scores, neutrophil-to-lymphocyte ratio (NLR), blood urea nitrogen (BUN) to creatinine ratio, C-reactive protein (CRP)-to-albumin ratio; and decreased platelet (PLT) counts were independent factors (p<0.05) for predicting closer death in the final month of life. All parameters above showed significant changes over time in the last month, although the starting time points for these changes varied. CONCLUSION: Abnormal consciousness, elevated ECOG scores, NLR, BUN-to-creatinine ratio, CRP-to-albumin ratio, and decreased PLT counts are potentially useful markers for approaching death in terminally ill cancer patients. These findings are valuable for understanding the biology of death in terminally ill cancer patients. And to some extent, they may help clinicians recognise that a patient will die in the near future. KEY WORDS: Cancer, Ordinal regression analysis, Death, Terminal illness, Biomarkers.

Neonatal palliative care: Assessing the nurses educational needs for terminally ill patients.

BACKGROUND: For terminally sick neonates and their families, it's crucial to provide holistic nursing care that incorporates both curative and palliative care as much as feasible. It is well known that the biggest obstacle to delivering palliative care for neonatal children is a lack of training for nurses. Aim: The aim of this research is to investigate the experiences of nurses who provide care for neonates who are terminally ill as well as their educational requirements for neonatal palliative care. METHOD: A cross-sectional descriptive study was conducted among 200 nurses working in a tertiary center providing care for terminally ill neonates in Saudi Arabia. Data was collected from using Neonatal Palliative Care Questionnaire (QNPC) from January 2021 to March 2021. RESULTS: Two hundred nurses were surveyed (the response rate was 79%). The mean age of the 158 participants was 35.67 (standard deviation (SD): 7.43), and the majority were female (151; 95.6%). The majority were bachelor's holders (119; 75.3%), with more than 5 years of experience in providing care for neonates (100; 63.3%). Most of the participants reported not receiving any education about palliative care (115; 72.8%). Nurses reported a moderate level of experience in all areas of neonatal palliative care. The total mean score of palliative care experiences of neonates was 3.42 (SD: 1.35). However, the majority of nurses reported little experience discussing the transition period to palliative care for neonates 2.95 (SD: 1.93), the discussion of code status (DNR) during terminal illness of neonates 3.11 (SD: 1.54) and spiritual support 2.90 (SD: 1.55). CONCLUSION: The assessment of the fundamental skills of neonatal palliative care by nurses was insufficient. To enhance the quality of care, it is crucial to incorporate education on neonatal palliative care into programs for nursing staff development.

Factors Associated with Karnofsky Performance Status and its Trajectory in the Last Month of Life in Patients with Terminal Cancer / Fatores Associados ao Karnofsky Performance Status e sua Trajetória no Último Mês de Vida em Pacientes com Câncer Terminal / Factores Asociados al Karnofsky Performance Status y su Trayectoria en el Último Mes de Vida en Pacientes Oncológicos Terminales

Introduction: Karnofsky Performance Status (KPS) can characterize the impact of the disease on cancer patients. Objective: To evaluate the factors associated with KPS and its trajectory in the last month of life in patients with terminal cancer. Method: Retrospective cohort study, with terminal cancer patients enrolled in a Palliative Care Unit, who died between July and August 2019. The dependent variable was the KPS assessed daily in the last month of life. A cross-sectional analysis of factors associated with initial KPS was performed using ordinal logistic regressions. To verify the trajectory of KPS in the last month of life, longitudinal graphic analyzes were performed. Results: 108 patients were evaluated, most of whom were >60 years old (68.5%) and female (62.0%). The most prevalent tumor sites were the gastrointestinal tract (GIT) (24.3%), breast (18.7%) and head and neck (HN) (16.8%). In the multiple model, the primary tumor sites remained associated with KPS. During the last month of life, the reduction in KPS was more pronounced in those with tumors in the GIT, HN and connective bone tissue, who had higher KPS values on the thirtieth day before death when compared to the others. On the other hand, those with central nervous system and lung cancer started the follow-up period with lower KPS values and had a less exacerbated reduction than the others. Conclusion: KPS values decrease in the last month of life, but with different intensity according to the tumor site in patients with terminal cancer

Introdução: O Karnofsky Performance Status (KPS) pode caracterizar o impacto da doença em pacientes com câncer. Objetivo: Avaliar os fatores associados ao KPS e a sua trajetória no último mês de vida em pacientes com câncer terminal. Método: Estudo de coorte retrospectivo, com pacientes com câncer terminal internados em uma unidade de cuidados paliativos, falecidos entre julho e agosto de 2019. A variável dependente foi o KPS avaliado diariamente no último mês de vida. Uma análise transversal dos fatores associados ao KPS inicial foi realizada por meio de regressões logísticas ordinais. Para verificar a trajetória do KPS no último mês de vida, foram realizadas análises gráficas longitudinais. Resultados: Foram avaliados 108 pacientes, cuja maioria possuía >60 anos (68,5%) e era do sexo feminino (62,0%). Os sítios tumorais mais prevalentes foram o trato gastrointestinal (TGI) (24,3%), mama (18,7%) e cabeça e pescoço (CP) (16,8%). No modelo múltiplo, os sítios tumorais primários permaneceram associados ao KPS. Durante o último mês de vida, a redução do KPS foi mais pronunciada naqueles com tumor no TGI, CP e tecido ósseo conjuntivo, que apresentaram valores mais elevados de KPS no trigésimo dia antes do óbito quando comparados aos demais. Por outro lado, aqueles com câncer no sistema nervoso central e pulmão iniciaram o período de seguimento com valores de KPS mais baixos e tiveram redução menos exacerbada que os demais. Conclusão: Os valores de KPS diminuem no último mês de vida, porém com intensidade diferente de acordo com o local do tumor em pacientes com câncer terminal.

Introducción: Karnofsky Performance Status (KPS) puede caracterizar el impacto de la enfermedad en pacientes con cáncer. Objetivo: Evaluar los factores asociados al KPS y su trayectoria en el último mes de vida en pacientes con cáncer terminal. Método: Estudio de cohortes retrospectivo, con pacientes oncológicos terminales ingresados en una Unidad de Cuidados Paliativos, fallecidos entre julio y agosto de 2019. La variable dependiente fue el KPS valorado diariamente en el último mes de vida. Se realizó un análisis transversal de los factores asociados con KPS inicial mediante regresiones logísticas ordinales. Para verificar la trayectoria de KPS en el último mes de vida, se realizaron análisis gráficos longitudinales. Resultados: Se evaluaron 108 pacientes, la mayoría con >60 años (68,5%) y del sexo femenino (62,0%). Los sitios tumorales más prevalentes fueron el tracto gastrointestinal (TGI) (24,3%), mama (18,7%) y cabeza y cuello (CC) (16,8%). En el modelo múltiple, los sitios del tumor primario permanecieron asociados con KPS. Durante el último mes de vida, la reducción de KPS fue más pronunciada en aquellos con tumores en TGI, CC y tejido conectivo óseo, quienes tenían valores de KPS más altos en el trigésimo día antes de la muerte en comparación con los demás. Por otro lado, aquellos con cáncer de sistema nervioso central y pulmón comenzaron el período de seguimiento con valores más bajos de KPS y tuvieron una reducción menos exacerbada que los demás. Conclusión: Los valores de KPS disminuyen en el último mes de vida, pero con distinta intensidad según la localización del tumor en pacientes con cáncer terminal.

Cuidado de enfermagem às pessoas em final de vida por covid-19 na unidade de terapia intensiva: experiências de profissionais / Nursing care to people at the end of life due to COVID-19 in the intensive care unit: experiences of professionals / Cuidado de enfermería a las personas al final de su vida por COVID-19 en la unidad de cuidados intensivos: experiencias de profesionales

OBJETIVO:Conhecer as experiências de profissionais de enfermagem no cuidado às pessoas em final de vida pela COVID-19 hospitalizadas em unidade de terapia intensiva. METODOLOGÍA: Para isso, empreendeu-se uma pesquisa qualitativa, descritiva, que se aproxima do paradigma interpretativo. Entre maio e junho de 2022 foram entrevistados 12 profissionais de enfermagem atuantes em unidade de terapia intensiva de um hospital filantrópico do Sul do Brasil. Os dados foram gerenciados no programa Atlas.ti e submetidos à análisetemática. RESULTADOS: Apresentados neste artigo dizem respeito à unidade temática O cuidado de enfermagem diante do final da vida por COVID-19 na Unidade de Terapia Intensiva, que se constituiu pelas subunidades: A possibilidade da morte: "infelizmente não tinha muito o que fazer, com relação a doença, pra reverter aquela situação", "A gente ficava ciente de que o paciente ia morrer": a comunicação entre equipes assistenciais, "A gente fazia tudo para todos": cuidados com o corpo na fase final de vida pela COVID-19, "A gente não tinha muito contato com a família": o distanciamento da equipe de enfermagem e, por fim, "Era eles com eles mesmos": vivência dos pacientes em UTI sob a perspectiva dos profissionais. CONCLUSÕES: As experiências descritas reforçam a necessidade de educação das equipes de enfermagem, para os cuidados paliativos, especialmente em UTI. Embora eles não se restrinjam à fase final da vida, podem fazer a diferença entre um morrer com dignidade e um morrer com sofrimento e solidão, sobretudo em períodos de emergência sanitária marcados por grande mortalidade.

OBJECTIVE:To know the experiences of nursing professionals caring for people at the end of life due to COVID-19 hospitalized in an intensive care unit. METHODOLOGY: For this, we undertake a qualitative, descriptive research, which approaches the interpretative paradigm. Between May and June 2022, we interviewed 12 nursing professionals working in an intensive care unit of a philanthropic hospital in southern Brazil. The data were managed in the Atlas.ti program and submitted to thematic analysis. RESULTS:Presented inthis article concern the thematic unit Nursing care at the end of life due to COVID-19 in Intensive Care Unit, constituted by the subunits: The possibility of death: "Unfortunately we didn't have much to do to reverse that situation"; "We were aware that the patient was going to die": communication between care teams; "We did everything for everyone"; "We did not have much contact with the family": the distancing of the nursing team and, finally, "It was them with themselves": experience of patients in ICUfrom the perspective of professionals. CONCLUSIONS: Experiences described reinforce the need for education to nursing teams, especially in ICU, for palliative care. Although they are not restricted to the final stage of life, they can make the difference between dying with dignity and dying with suffering and loneliness, especially in periods of health emergency marked by high mortality.

OBJETIVO: Conocer las experiencias de profesionales de enfermería en el cuidado a las personas en final de vida por COVID-19 hospitalizadas en Unidad de TerapiaIntensiva (UTI). METODOLOGÍA: Para ello, se emprendió una investigación cualitativa, descriptiva, que se aproxima al paradigma interpretativo. Entre mayo y junio de 2022 fueron entrevistados 12 profesionales de enfermería, actuando en UTIde un hospital filantrópico del sur de Brasil. Los datos se gestionaron en el programa Atlas.ti y se sometieron al análisis temático. RESULTADOS: Presentados en este artículo se refieren a la unidad temática El cuidado de enfermería ante el final de la vida por COVID-19 en la UTI, que se constituyó por las subunidades: La posibilidad de la muerte: "desafortunadamente no había mucho que hacer para revertir esa situación", "Nos dimos cuenta de que el paciente iba a morir": la comunicación entre equipos asistenciales, "Hicimos todo por todos": el cuidado del cuerpo en la fase final de la vida por COVID-19, "No teníamos mucho contacto con la familia": el distanciamiento del equipo de enfermería y, por último, "Eran ellos mismos": vivencia de los pacientes en UTI desde la perspectiva de los profesionales. CONCLUSIONES: Las experiencias descritas refuerzan la necesidad de educación de los equipos de enfermería, especialmente en UCI, para los cuidados paliativos. Aunque no se limitan a la fase final de la vida, pueden hacer la diferencia entre un morir con dignidad y un morir con sufrimiento y soledad, sobre todo en períodos de emergencia sanitaria marcados por gran mortalidad

Differences in Fentanyl Requirements in Terminally Ill Cancer Patients.

Cancer pain is a significant issue in terminally ill cancer patients (TICPs). The fentanyl patch (FP) is used extensively for treating cancer pain, but FP requirements vary between patients. We aimed to identify determinants of FP requirements in TICPs and propose effective pain relief using a FP. In a retrospective chart review, we investigated cancer patients admitted to our hospital from April 2012 to July 2015 and used FP until death. The time course of FP use in TICPs until death was examined. The primary endpoint was the final dose of FP use (FDFP). In total, 79 patients were included the analysis. FDFP was inversely correlated with age (R= -0.262, p = 0.20; Spearman test). FDFP tended to be higher in males than in females and was significantly higher in patients with pancreatic cancer than in patients without pancreatic cancer (p = 0.017; Welch's test). FP adjustments were more frequent in the last 60 days of life in patients with pancreatic cancer than in patients with other malignancies (P for interaction = 0.002; mixed effect model). In conclusion, younger age, and pancreatic cancer were associated with higher FP requirements in TICPs. TICPs with pancreatic cancer required more frequent FP adjustment near death.

Abordagem do paciente terminal: aspectos psicodinâmicos - "A morte como símbolo de transformação" / Approach to terminally ill patients: psychodynamic aspects - "Death as a symbol of transformation"

O autor discute a importância de se resgatar a morte como algo natural, tirando-a do interdito em que se encontra. Tenta mostrar o quanto este aspecto cria distorções para a vida, determinando uma série de distúrbios na conduta médica, em especial na abordagem do paciente terminal. Defende a ideia de que é uma doença da nossa cultura ocidental e a situação que leva a esta repressão é negação da morte. Dentro das referências teóricas da Psicologia Analítica de Jung, o autor propõe condutas para se tentar resgatar a vivência simbólica da morte restituindo-se a polaridade dialética Vida-Morte. Defende a proposição de que a vida só pode ter um sentido pleno se não negarmos a morte. Propõe que, como no parto, o progresso da Medicina se harmonize com respeito aos limites da Vida e da personalidade do paciente, frequentemente desrespeitados. Discute a morte como símbolo fundamental dentro do processo de individuação.

The author discusses the importance of readdressing death as something natural, retrieving it from the interdict in which it finds itself. He attempts to show the extent to which this aspect creates distortions to life, determining a series of disorders in medical conduct, especially in the approach to terminally ill patients. He defends the idea that it is a disease of our Western culture and that the situation that leads to this repression is the negation of death. In line with the theoretical references of Jung's Analytical Psychology, the author proposes conducts to try to rescue the symbolic experience of death and restore the life-death dialectical polarity. He supports the proposition that life can only have a full meaning if we do not negate death. He proposes that, as in childbirth, the progress of medicine should harmonize with respect to the limits of life and the patient's personality, which are often disrespected. He discusses death as a fundamental symbol within the individuation process.

El autor discute la importancia de rescatar la muerte como algo natural, sacándola del entredicho en que se encuentra. Intenta mostrar cuánto este aspecto crea distorsiones para la vida, determinando una serie de perturbaciones en la conducta médica, especialmente en el abordaje del paciente terminal. Defiende la idea de que es una enfermedad de nuestra cultura occidental y la situación que lleva a esta represión es la negación de la muerte. Dentro de los referentes teóricos de la Psicología Analítica de Jung, el autor propone conductas para tratar de rescatar la experiencia simbólica de la muerte, restituyendo la polaridad dialéctica Vida-Muerte. Defiende la proposición de que la vida sólo puede tener pleno sentido si no negamos la muerte. Propone que, como en el parto, el progreso de la Medicina debe armonizar respecto a los límites de la Vida y de la personalidad del paciente, que muchas veces son irrespetados. Se habla de la muerte como símbolo fundamental dentro del proceso de individuación.

Actualización del enfoque paliativo en la Unidad de Cuidados Intensivos Pediátricos / Update on the palliative care approach at the pediatric intensive care unit

Los cuidados paliativos pediátricos pretenden mejorar la atención y la calidad de vida de los niños en situación terminal o con una enfermedad de pronóstico letal. En el contexto hospitalario, las decisiones y tratamientos vinculados al final de la vida se realizan de forma frecuente en las unidades de cuidados intensivos. Es por esto que la integración de los cuidados paliativos en estos servicios constituye una evolución lógica del abordaje clínico del niño grave. Se realiza en este trabajo una actualización acerca de las indicaciones y particularidades del enfoque paliativo en el contexto de los cuidados intensivos pediátricos. Se contemplan el inicio del enfoque paliativo, la toma de decisiones, los aspectos comunicativos, el tratamiento farmacológico, el manejo de síntomas y la sedación paliativa.

Pediatric palliative care aims at improving the care and quality of life of children who are terminally ill or have a fatal prognosis. In the hospital setting, end-of-life decisions and treatments are common in intensive care units. This is why the integration of palliative care in these units is a logical evolution of the clinical approach to severely ill children. This study provides an update on the indications and characteristics of the palliative care approach in the context of pediatric intensive care. Here we describe palliative care approach initiation, decision-making, communicative aspects, drug treatment, symptom management, and palliative sedation.

Update on the palliative care approach at the pediatric intensive care unit. / Actualización del enfoque paliativo en la Unidad de Cuidados Intensivos Pediátricos.

Pediatric palliative care aims at improving the care and quality of life of children who are terminally ill or have a fatal prognosis. In the hospital setting, end-of-life decisions and treatments are common in intensive care units. This is why the integration of palliative care in these units is a logical evolution of the clinical approach to severely ill children. This study provides an update on the indications and characteristics of the palliative care approach in the context of pediatric intensive care. Here we describe palliative care approach initiation, decision-making, communicative aspects, drug treatment, symptom management, and palliative sedation.

Los cuidados paliativos pediátricos pretenden mejorar la atención y la calidad de vida de los niños en situación terminal o con una enfermedad de pronóstico letal. En el contexto hospitalario, las decisiones y tratamientos vinculados al final de la vida se realizan de forma frecuente en las unidades de cuidados intensivos. Es por esto que la integración de los cuidados paliativos en estos servicios constituye una evolución lógica del abordaje clínico del niño grave. Se realiza en este trabajo una actualización acerca de las indicaciones y particularidades del enfoque paliativo en el contexto de los cuidados intensivos pediátricos. Se contemplan el inicio del enfoque paliativo, la toma de decisiones, los aspectos comunicativos, el tratamiento farmacológico, el manejo de síntomas y la sedación paliativa.

Quality of death and its related factors in terminally ill patients, as perceived by nurses.

BACKGROUND: Little is known about the quality of death of terminally ill patients in hospitals in Thailand. AIM: To examine the quality of death of terminally ill patients and investigate correlations between the quality of death and the organisational climate; nurses' palliative care knowledge; nurses' palliative care practice; and nurses' perceptions of barriers in providing palliative care. METHODS: A cross-sectional survey design was used. Data collected among 281 nurses were analysed by descriptive statistics, Pearson correlation and Spearman's rank correlation. RESULTS: The overall quality of death of terminally ill patients in the hospital was moderate. Organisational climate and nurses' palliative care practice positively correlate with terminally ill patients' quality of death. Nurses' difficulty in providing palliative care negatively correlates with terminally ill patients' quality of death. CONCLUSION: Promoting an organisational climate and enhancing nurses' palliative care practice may improve the quality of death of terminally ill patients in this hospital.