Reply to Twycross et al. Comment on "Ramos-Rincon et al. Palliative Sedation in COVID-19 End-of-Life Care. Retrospective Cohort Study. Medicina 2021, 57, 873".

First of all, we want to thank Twycross, Wong, and Vivat [...].

Palliative Sedation in COVID-19 End-of-Life Care. Retrospective Cohort Study.

Background and Objectives: Descriptions of end-of-life in COVID-19 are limited to small cross-sectional studies. We aimed to assess end-of-life care in inpatients with COVID-19 at Alicante General University Hospital (ALC) and compare differences according to palliative and non-palliative sedation. Material and Methods: This was a retrospective cohort study in inpatients included in the ALC COVID-19 Registry (PCR-RT or antigen-confirmed cases) who died during conventional admission from 1 March to 15 December 2020. We evaluated differences among deceased cases according to administration of palliative sedation. Results: Of 747 patients evaluated, 101 died (13.5%). Sixty-eight (67.3%) died in acute medical wards, and 30 (44.1%) received palliative sedation. The median age of patients with palliative sedation was 85 years; 44% were women, and 30% of cases were nosocomial. Patients with nosocomial acquisition received more palliative sedation than those infected in the community (81.8% [9/11] vs 36.8% [21/57], p = 0.006), and patients admitted with an altered mental state received it less (20% [6/23] vs. 53.3% [24/45], p = 0.032). The median time from admission to starting palliative sedation was 8.5 days (interquartile range [IQR] 3.0-14.5). The main symptoms leading to palliative sedation were dyspnea at rest (90%), pain (60%), and delirium/agitation (36.7%). The median time from palliative sedation to death was 21.8 h (IQR 10.4-41.1). Morphine was used in all palliative sedation perfusions: the main regimen was morphine + hyoscine butyl bromide + midazolam (43.3%). Conclusions: End-of-life palliative sedation in patients with COVID-19 was initiated quite late. Clinicians should anticipate the need for palliative sedation in these patients and recognize the breathlessness, pain, and agitation/delirium that foreshadow death.

Diferencias en pacientes oncológicos y no oncológicos ingresados en una unidad de cuidados paliativos de reciente creación en un hospital de tercer nivel en la Comunidad Valenciana (España) / Differences in cancer patients and non-cancer patients admitted to a new palliative care unit of the general university hospital of the Valencian Community (Spain)

OBJETIVO: Evaluar las diferencias entre pacientes paliativos oncológicos y no oncológicos ingresados en la Unidad de Cuidados Paliativos. MATERIAL Y MÉTODOS: Estudio retrospectivo y analítico de los paciente paliativos atendidos en la Unidad de Cuidados Paliativos perteneciente al Servicio de Medicina Interna del Hospital General Universitario de Alicante entre el 1 junio de 2013 y el 31 de junio del 2014. De cada paciente se recogieron variables epidemiológicas (edad, sexo), clínicas (fiebre, caquexia/anorexia, astenia, náuseas/vómitos, somnolencia, síntomas psicológicos, dolor y disnea), evolutivas y necesidad de sedación paliativa. RESULTADOS: Fueron estudiados en la Unidad de Cuidados Paliativos 143 de los 1.599 (8,9%) ingresados en la sección de medicina interna. La mediana de edad de los paciente fue de 83 años (recorrido intercuartílico: 75-89) y la relación hombre/mujeres fue de 1,4. Sesenta y cuatro (44,7%) ingresos fueron pacientes paliativos oncológicos y 79 (65,3%) no oncológicos. Y dentro de los pacientes no oncológicos estos fueron: 38 (48,1%) pacientes pluripatológicos con progresión irreversible de comorbilidades, 33 (41,8%) (pacientes por enfermedad crónica en estadio final y 8 (10,1%) pacientes de edad avanzada en estadio final de la vida. Respecto a los síntomas hubo una mayor probabilidad de disnea en los pacientes paliativos no oncológicos (odds ratio [OR]: 4,65, intervalo de confianza [IC] 95%: 2,17-10,7) y una menor probabilidad de dolor (OR: 0,23; IC 95%: 0,09-0,54) y náuseas/vómitos (p = 0,025) en ellos. Así como un mayor control de síntomas fue mayor en los pacientes paliativos no oncológicos (OR: 2,03; IC95%: 1,0-4,10). La sedación paliativa fue administrada en el 23% de los casos, similar en los dos grupos de pacientes. CONCLUSIÓN: La sintomatología de los cuidados paliativos es diferente en pacientes no oncológicos y oncológicos

OBJECTIVE: To evaluate patient differences between palliative cancer and non-cancer patients admitted to the Unit of Palliative Care. MATERIAL AND METHODS: A retrospective and analytical study of the palliative patients treated in the Unit of Palliative Care under the Department of Internal Medicine, Hospital General Universitario of Alicante between 1 June 2013 and 31 June 2014. Variables included were epidemiological (age, sex), clinical symptoms (fever, cachexia / anorexia, asthenia, nausea / vomiting, drowsiness, psychological symptoms, pain and dyspnoea), outcome and need for palliative sedation. RESULTS: One hundred and forty-three patients out of the 1,599 (8.9%) admitted to the Section of Internal Medicine were studied in the Unit of Palliative Care. The median age of the patients was 83 years (interquartile range: 75-89) and the male: female ratio was 1.4. Sixty-four (44.7%) were palliative cancer patients and 79 (65.3%) were non-cancer palliative. Out of 79 non-cancer palliative PATIENTS: 38 (48.1%) were patients with irreversible progression of comorbidities, 33 (41.8%) patients with end-stage chronic disease and 8 (10.1%) elderly patients in the final stage of life. With regard to symptoms, the non-cancer palliative patients were more likely to experience dyspnoea (odds ratio [OR]: 4.65, 95% confidence interval [CI]:, 1.7-10 7) and less likely to experience pain (OR: 0.23; 95% CI: 0.09 to 0.54) and nausea /vomiting (p =.025). Symptoms were better controlled in the non- non- cancer palliative patients (OR: 2.03; 95% CI 1.0 to 4.10). Palliative sedation was administered to 23% of the patients, similar in both types of PATIENTS: CONCLUSIONS: The symptoms of palliative care were different in the non-cancer and cancer patients

Malestar emocional de pacientes y familiares en la Unidad de Cuidados Paliativos de un hospital general: un estudio piloto / Emotional distress of patients and caregivers in a Palliative Care Unit at a general hospital: a pilot study

ANTECEDENTES Y OBJETIVO: La experiencia de una enfermedad avanzada genera malestar emocional en los pacientes y familiares. El objetivo del trabajo consiste en valorar un procedimiento de evaluación del malestar emocional del binomio paciente-cuidador en una UCP-HA de reciente creación, como un primer paso para reducirlo en la medida de lo posible. Sujetos y MÉTODO: Se realizó un muestreo de conveniencia entre noviembre de 2015 y marzo de 2016. Fueron entrevistados 25 pacientes utilizando el índice de Barthel, el Cuestionario de Evaluación de Síntomas Edmonton y el Cuestionario de Detección del Malestar Emocional. Fueron evaluados 25 cuidadores mediante la Escala Hospitalaria de Ansiedad y Depresión y la Escala Zarit reducida. RESULTADOS: Se pudo evaluar al 37% de los pacientes y cuidadores ingresados en la UCP durante el periodo de estudio. Existe un alto nivel de malestar emocional en el 88% de los pacientes. En los cuidadores evaluados aparecen niveles altos de ansiedad y se observa sobrecarga del cuidador en el 80% según la Escala Zarit reducida. CONCLUSIÓN: A pesar de las dificultades que conlleva evaluar a los pacientes con enfermedad avanzada y sus cuidadores, consideramos que estos procedimientos contribuyen a detectar el sufrimiento y promover su bienestar

BACKGROUND AND OBJECTIVE: The experience of an advanced disease causes emotional distress in patients and relatives. The objective of this paper is to assess a process of evaluation of emotional distress of both patients and caregivers in a recently created Palliative Care Unit of a General Hospital, as a first step towards reducing it as far as possible. Subjects and METHODS: A convenience sampling was used, from November 2015 to 2016 March. A total of 25 patients were interviewed using the Barthel Index, the Edmonton Symptom Assessment System and the questionnaire of Detection of Emotional Distress. Also 25 caregivers were interviewed using the Hospital Anxiety and Depression Score and the reduced Zarit Scale. RESULTS: 37% of patients and caregivers admitted in the Palliative Care Unit during the period of study could be evaluated. A high level of emotional distress was detected among 88% of PATIENTS: Caregivers were observed to have high levels of anxiety and burden was detected in 80% according to the reduced Zarit Scale. CONCLUSIONS: Despite the difficulties involved in evaluating patients with advanced disease and their caregivers, we think these procedures contribute to detecting suffering and to promoting their wellness

Perceptions of health professionals on subcutaneous hydration in palliative care: A qualitative study.

BACKGROUND: Evidence indicates that hypodermoclysis is as safe and effective as intravenous rehydration in the treatment of the symptomatology produced by mild to moderate dehydration in patients for whom oral route administration is not possible. However, the knowledge about the use of the subcutaneous hydration and its correlates is still limited. AIM: To explore the perceptions, attitudes and opinions of health professionals in palliative care on the administration of subcutaneous hydration. DESIGN: This is a qualitative focus group study with health professionals of palliative care. Four focus groups were carried out until data saturation. A qualitative content analysis was performed. SETTING/PARTICIPANTS: A total of 37 participants, physicians and nurses, were recruited from different services of palliative care in Spain. RESULTS: In all, 856 meaning units were identified, from which 56 categories were extracted and grouped into 22 sub-themes, which were distributed among four themes: 'factors which influence the hydration decision', 'factors related to the choice of the subcutaneous route for hydration', 'the subcutaneous hydration procedure' and 'performance guidelines and/or protocols'. CONCLUSIONS: Variables which most often influence the use of subcutaneous route to hydration are those that are linked to the characteristics of the patient, the team and the family, and other like the context and professionals' subjective perceptions about this medical practice.

Evaluación del bienestar espiritual en pacientes en cuidados paliativos / Assessment of spiritual well-being in palliative care patients

OBJETIVO: La evaluación del bienestar espiritual del paciente es un aspecto crítico y fundamental en la atención holística y multidisciplinar. Disponer de un instrumento válido de evaluación de la espiritualidad con finalidad tanto investigadora como clínica es muy conveniente. En este estudio se examina la presencia de bienestar espiritual, o sentido de la vida, en pacientes en cuidados paliativos a través de un cuestionario con garantías psicométricas de calidad. PACIENTES Y MÉTODOS: Han participado en este estudio con diseño transversal un total de 60 pacientes en cuidados paliativos. El instrumento básico empleado ha sido la versión española del Cuestionario del Sentido de la Vida (Meaning in Life Scale), de 21 ítems y 4 escalas: Propósito, Falta de significado, Paz, y Beneficios de la espiritualidad. Se proporciona, también, una puntuación global de espiritualidad. Se registraron, además, variables de tipo clínico y sociodemográfico, así como estimaciones del estado de salud, calidad de vida (general y actual), felicidad personal, el grado de religiosidad y la creencia en la existencia de vida ultraterrena. RESULTADOS: Los resultados muestran que la versión española de este instrumento (Cuestionario del Sentido de la Vida [Meaning in Life Scale]) es una medida de bienestar espiritual con garantías psicométricas de calidad (buena fiabilidad y validez), adecuada para evaluar la complejas exigencias generadas por la enfermedad crónica del paciente en cuidados paliativos. El bienestar espiritual se relaciona significativamente con diversas variables de calidad de vida, percepción de salud, felicidad personal o religiosidad. No existe una relación significativa entre las puntuaciones de espiritualidad y variables sociodemográficas como la edad o el sexo. La presencia de bienestar espiritual en estos pacientes es más baja de la esperada. CONCLUSIÓN: Este cuestionario de espiritualidad resulta un instrumento válido para valorar las 4 dimensiones básicas del bienestar espiritual. Los resultados sugieren que considerar y evaluar el bienestar espiritual de los pacientes en cuidados paliativos puede ser de ayuda para la práctica clínica. La presencia de espiritualidad parece desempeñar un papel importante en el bienestar psicológico, el estado de salud y la calidad de vida percibidos por el paciente en cuidados paliativos. El grado de bienestar espiritual de estos pacientes es relativamente bajo

OBJECTIVE: Assessing spiritual well-being is an essential and critical aspect of holistic and multidisciplinary patient care practice. A valid assessment of spirituality is necessary for clinical and research purposes. This study examined the presence of spiritual well-being, or meaning in life, in palliative care patients using a psychometrically-sound questionnaire of spirituality. PATIENTS AND METHODS: A cross-sectional study was carried out with 60 palliative care patients. The main instrument, a Spanish-language version of the 21-item Meaning in Life Scale, comprises 4 scales: PURPOSE, Lessened Meaning, Peace, and Benefits of Spirituality. A total score for Spiritual well-being is also achieved. The following variables were also used: clinical, sociodemographic and assessments on self-rated health, quality of life (general and recently), personal happiness, religiosity, and belief in an afterlife. Results: Results of this study demonstrated that the Meaning in Life Scale is a psychometrically-sound measure of spiritual well-being for the palliative care patient (good reliability and validity), as they manage the complex demands of a chronic illness. Spiritual well-being was significantly associated with various quality of life variables, health status, personal happiness, or religiosity in patients on palliative care. No association was found between spirituality scores and sex or age. The presence of spiritual well-being in palliative care patients was lower than expected. CONCLUSION: This spirituality questionnaire is a valid instrument to assess 4 core dimensions of spiritual well-being. The results suggest that to address and assess spiritual well-being with palliative care patients may be helpful for clinical praxis. Spirituality may play an important role in the psychological well-being, quality of life, and self-rated health for palliative care patients. Spiritual well-being in these patients was relatively low