Sedation in pediatric palliative care: The role of pediatric palliative care teams.

OBJECTIVES: Palliative sedation (PS) consists of the use of drugs to alleviate the suffering of patients with refractory symptoms, through a reduction in consciousness. The aim of this study is to describe the incidence of and indications for PS in patients treated by pediatric palliative care teams (PPCT), and the relationship between PS, the place of death, and the characteristics of the care teams. METHODS: Ambispective study with the participation of 14 PPCT working in Spain. RESULTS: From January to December 2019, a total of 164 patients attended by these PPCT died. Of these, 83 (50.6%) received PS during their last 24 hours. The most frequent refractory symptoms were terminal suffering (n = 40, 48.2%), dyspnea (n = 9, 10.8%), pain (n = 8, 9.6%), and convulsive state (n = 7, 8.4%). Sedation in the last 24 hours of life was more likely if the patient died in hospital, rather than at home (62.9% vs. 33.3%, p < 0.01); if the parents had not expressed their preference regarding the place of death (69.2% vs. 45.2%, p = 0.009); and if the PPCT had less than 5 years' experience (66.7% vs. 45.5%, p = 0.018). SIGNIFICANCE OF RESULTS: PS is a real possibility in pediatric end-of-life care and relates to care planning and team expertise.

Understanding pediatric palliative care within interdisciplinary palliative programs: a qualitative study.

PURPOSE: To describe the process of delivery of pediatric palliative care from the perspective of a pediatric interdisciplinary team and the children's parents. METHODS: A qualitative descriptive case study was conducted. Purposeful sampling took place within a specialized pediatric palliative care Unit in Madrid (Spain), located at the Niño Jesus Hospital. The study participants included a specialized pediatric palliative care team from Madrid's pediatric palliative care program, other professional teams involved in interdisciplinary care and parents of children under pediatric palliative care. Data were collected via semi-structured interviews, focus groups and researchers' field notes. A thematic analysis was performed. RESULTS: This study included 28 participants (20 women, 8 men), of whom 18 were professionals who belonged to the pediatric palliative care interdisciplinary team, 4 professionals were from other units that collaborated with the pediatric palliative care, and 6 were parents (5 women, 1 man). The mean age of the pediatric palliative care members was 38.2 years (SD ± 7.9), that of the collaborating professionals was 40.5 (SD ± 6.8), and that of the parents was 44.2 (SD ± 5.4). Two main themes emerged: a) Pediatric palliative care has a distinct identity, associated with life. It represents the provision of special care in highly complex children, in the context of the home, far from the hospital environment; b) The team is key: its interdisciplinary organization provides a more comprehensive view of the child and their family, fosters communication among professionals, and improves coordination with other services involved in the care of children. The mindset shift experienced by ID-PPC professionals towards a palliative approach makes them more sensitive to the needs of their patients and leads them to develop specific skills in areas such as communication, decision-making, and adaptability that were identified as differentiating aspects of pediatric palliative care. CONCLUSIONS: Describing pediatric palliative care from the professional and parental perspective helps to establish realistic and comprehensive goals for the care of children and their parents. The findings of this study may help with the establishment of a pediatric palliative care team, as a necessary organizational change in a health care system that cares for children with complex and life-threatening conditions. Promoting training in pediatric palliative care, prioritizing more horizontal organizations, providing tools and spaces for coordination and communication between professionals from different services, together with the creation of a position of case coordinator in the care process of children could enhance the understanding of pediatric palliative care services.

The Emotional Experience of Caring for Children in Pediatric Palliative Care: A Qualitative Study among a Home-Based Interdisciplinary Care Team.

The healthcare providers caring for children with life-threatening illnesses experience considerable compassion fatigue. The purpose of this study was to describe the feelings and emotions of professionals working in an interdisciplinary pediatric palliative home care team. A qualitative case study was conducted, comprising 18 participants. A purposeful sampling technique approach was used including the home-based interdisciplinary pediatric palliative team. Data were collected via semi-structured interviews and researchers' field notes. A thematic analysis was performed. Two themes emerged: (a) changing life for the better, which described how professionals value life more and helping children and families provides compassion satisfaction, which is comforting and explains their dedication to care; (b) adverse effects of work highlighted the emotional burden of caring for children with life-limiting or life-threatening illnesses, which can affect their job satisfaction and may lead to burnout, showing how experiencing in-hospital child deaths with suffering leads professionals to develop an interest in specializing in pediatric palliative care. Our study provides information on possible causes of emotional distress in professionals caring for children with life-threatening illnesses and highlights strategies that can help them to reduce their distress.

Pediatric Palliative Care at Home: A Prospective Study on Subcutaneous Drug Administration.

CONTEXT: The subcutaneous route is a useful alternative for drug administration in palliative care. Although there is scientific evidence on its use in adult patients, the literature in pediatric palliative care is almost nonexistent. OBJECTIVES: To describe the experience of a pediatric palliative care unit (PPCU) with in-home subcutaneous drug administration symptom control. METHODS: Prospective observational study of patients receiving home-based subcutaneous treatment administered as part of a PPCU treatment regimen over 16 months. Analysis includes demographic and clinical variables and treatment received. RESULTS: Fifty-four different subcutaneous lines were inserted in the 15 patients included, mainly in the thigh (85.2%). The median time of needle in situ was 5.5 days (range: 1-36 days). A single drug was administered in 55.7% of treatments. The most frequently used drugs were morphine chloride (82%) and midazolam (55.7%). Continuous subcutaneous infusion was the predominant administration route (96.7%), with infusion rates oscillating between 0.1 mL/h and 1.5 mL/h. A statistically significant relationship was found between the maximum infusion rate and induration onset. Of the 54 lines placed, 29 (53.7%) had an associated complication requiring line removal. The primary cause for removal was insertion-site induration (46.3%). Subcutaneous lines were mainly used to manage pain, dyspnea, and epileptic seizures. CONCLUSION: In the pediatric palliative care patients studied, the subcutaneous route is most frequently used for administering morphine and midazolam in continuous infusion. The main complication was induration, especially with longer dwell times or higher infusion rates. However, further studies are required to optimize management and prevent complications.

End of life in patients attended by pediatric palliative care teams: what factors influence the place of death and compliance with family preferences?

Each year, more than 8 million children worldwide require specialized palliative care, yet there is little evidence available in pediatrics on the characteristics of the end of life in this context. Our aim is to analyze the characteristics of patients who die in the care of specific pediatric palliative care teams. This is ambispective, analytical observational, multicenter study conducted between 1 January and 31 December 2019. Fourteen specific pediatric palliative care teams participated. There are 164 patients, most of them suffering from oncologic, neurologic, and neuromuscular processes. The follow-up time was 2.4 months. The parents voiced preferences in respect of the place of death for 125 of the patients (76.2%). The place of death for 95 patients (57.9%) was at the hospital and 67 (40.9%) was at home. The existence of a palliative care team for over 5 years is more likely to be related to families voicing preferences and their fulfillment. Longer follow-up times by pediatric palliative care teams were observed in families with whom preferences regarding the place of death were discussed and in patients who died at home. Patients who did not receive home visits, when the pediatric palliative care team did not provide full care and when preferences regarding the place of death were not discussed with parents, were more likely to die in the hospital.   Conclusions: Advance planning of end-of-life care is one of the most important aspects of pediatric palliative care. The provision of services by the teams and the follow-up time are related to parents' expressed preferences and the place of death. What is Known: • Various studies have shown how the availability of pediatric palliative care services improves the quality of life of patients and their families while reducing costs. • The place of death is an important factor influencing the quality of end-of-life care for dying people. The increase in palliative care teams increases the number of deaths in the home and having this care available 24/7 increases the probability of dying at home. What is New: • Our study identifies how a longer follow-up time of patients by palliative care teams is significantly associated with death at home and with express and comply with the preferences expressed by families. • Home visits by the palliative care team increase the likelihood that the patient will die at her home and that the preferences expressed by the palliative care team families will be cared for.

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.

Palliative care in pediatric patients with central nervous system cancer: Descriptive and comparative study.

OBJECTIVES: Data regarding the palliative needs of pediatric patients with central nervous system (CNS) cancer are scarce. We aimed to describe the attention provided by a pediatric palliative care (PPC) team to patients with CNS cancer and the differences in care compared to patients who did not receive PPC. METHOD: This retrospective study was based on the clinical records of deceased patients with CNS cancer attended by a PPC team over 10 years, analyzing their trajectory and provision of PPC, including medical, psychological, social, and nursing interventions. Furthermore, we compared the last month of life care of deceased patients with CNS cancer in the same institution, based on whether they were attended by the PPC team. RESULTS: Of 71 patients, 59 received PPC, with a median of 1.6 months (Interquartile range: 0.6-5.2) from referral to death. Home hospitalization was provided to 84.8%, nursing interventions were registered in 89.8%, psychological characteristics in 84.7%, and social interventions in 88.1%. The most common symptoms were pain, dyspnea, and constipation. When comparing patients from the same hospital who received PPC (n = 36) with those who did not (n = 12), the former spent fewer days in the hospital in their last month and last week (p < 0.01) and were more likely to die at home (50% vs. 0%; p < 0.01). SIGNIFICANCE OF RESULTS: Patients with CNS cancer show various medical, social, and psychological needs during end-of-life care. Providing specific PPC interventions decreased the number of days spent at the hospital and increased the rate of death at home.

Descriptive analysis of palliative sedation in a pediatric palliative care unit.

INTRODUCTION: Data surrounding palliative sedation in pediatric patients is scarce. Our objective is to assess the utility of creating a quality standard for pediatric palliative sedation. MATERIAL AND METHODS: A non-systematic review of the literature was used to find recommendations for pediatric palliative sedation, after which a definition was established based on three items: (1) indication, (2) consent, and (3) application. Afterwards, a retrospective analysis of palliative sedations applied by our unit over 5 years was performed. RESULTS: Out of 163 patients, palliative sedation was applied in 20, in 17 of them by our unit (14/20 males; median: 11.9 years). Twelve patients had oncological diseases, seven had neurological conditions, and one had a polymalformative syndrome. Nine patients had more than one symptom at the time of PS initiation with pain (11/17) and dyspnoea (10/17) being the most frequent. As for the definition, only three patients achieved a global completion, with the registration of the consent, specification of refractoriness and the establishment of an adequate initial sedative dose being the areas with more possible improvement. CONCLUSIONS: The application of the definition allowed us to analyze and find areas of improvement for our clinical practice of palliative sedation in pediatric patients.

End of life in patients under the care of paediatric palliative care teams. Multicentre observational study.

INTRODUCTION: Around 2000 children and adolescents die each year in Spain, however, we know little about the particularities of deaths in paediatrics. The purpose of this study is to document the characteristics of patients who die in the care of paediatric palliative care teams in Spain. PATIENTS AND METHODS: Retrospective, descriptive, multicentre study. Fourteen teams from all over the country participated. RESULTS: Data were obtained from 164 patients. In most cases the underlying disease stemmed from oncological, neurological or neuromuscular processes. The median age at death was 6.9 years (RIC 11.2). The median follow-up time by the team was 0.3 years (RIC 0.8 years). The most frequent symptoms in the last week of life were dyspnoea, pain, increased secretions and sleep disorders. The median number of drugs administered to each patient one week prior to death was 6 (RIC 4). The place of death for 95 of the patients (57.9%) was hospital while 67 (40.9%) died at home. CONCLUSIONS: There was a wide age range of patients and they had substantial exposure to polypharmacy. The follow-up time shows that patients have late access to palliative care programmes. An effort should be made to introduce this care earlier rather than relegating it to the end of life. In Spain there is an unequal distribution of resources and not all teams can provide care at home. The place of death should be interpreted with caution.

Análisis descriptivo de la sedación paliativa en una Unidad de Cuidados Paliativos Pediátricos / Descriptive analysis of palliative sedation in a pediatric palliative care unit

Introducción:Existen pocos datos referentes a la práctica de sedación paliativa en población pediátrica. El objetivo de este estudio es crear una definición estandarizada de sedación paliativa para población pediátrica y aplicarlo en una Unidad de Cuidados Paliativos Pediátricos.Material y métodos:Se realizó una revisión no sistemática de la literatura en búsqueda de la evidencia y recomendaciones existentes para la práctica de sedación en población pediátrica, tras lo cual se creó una definición de sedación paliativa basada en tres ítems: 1. Indicación 2. Consentimiento 3. Aplicación. Posteriormente se realizó una revisión retrospectiva de registros clínicos para analizar la práctica de sedación paliativa atendidos por la Unidad de Atención Integral Paliativa Pediátrica de Madrid (UAIPPM) en un periodo de cinco años (enero 2013-diciembre 2017).Resultados:De 163 pacientes analizados, la sedación se aplicó en 20, 17 pacientes de la propia Unidad (70% varones; mediana de edad: 11,9 años); 12 pacientes padecían cáncer, siete enfermedades neurológicas y uno un síndrome polimalformativo; 52,9% pacientes sufrían más de un síntoma en el momento de indicar la sedación paliativa, siendo el dolor (64,7%) y la disnea (58,8%) los más frecuentes. En cuanto a la definición, sólo tres pacientes consiguieron una cumplimentación global de la misma, siendo el registro del consentimiento informado el área con mayor potencial de mejora.Conclusiones:La evaluación basada en una definición estandarizada permitió definir la práctica de sedación paliativa en nuestra Unidad y encontrar áreas potenciales de mejora. (AU)

Introduction:Data surrounding palliative sedation in pediatric patients is scarce. Our objective is to assess the utility of creating a quality standard for pediatric palliative sedation.Material and methods:A non-systematic review of the literature was used to find recommendations for pediatric palliative sedation, after which a definition was established based on three items: (1) indication, (2) consent, and (3) application. Afterwards, a retrospective analysis of palliative sedations applied by our unit over 5 years was performed.Results:Out of 163 patients, palliative sedation was applied in 20, in 17 of them by our unit (14/20 males; median: 11.9 years). Twelve patients had oncological diseases, seven had neurological conditions, and one had a polymalformative syndrome. Nine patients had more than one symptom at the time of PS initiation with pain (11/17) and dyspnoea (10/17) being the most frequent. As for the definition, only three patients achieved a global completion, with the registration of the consent, specification of refractoriness and the establishment of an adequate initial sedative dose being the areas with more possible improvement.Conclusions:The application of the definition allowed us to analyze and find areas of improvement for our clinical practice of palliative sedation in pediatric patients. (AU)

El final de vida en pacientes atendidos por equipos de cuidados paliativos pediátricos. Estudio observacional multicéntrico / End of life in patients under the care of paediatric palliative care teams. Multicentre observational study

Introducción:Cada año fallecen en España alrededor de 2000 niños y adolescentes; sin embargo, conocemos poco las particularidades que envuelven a la muerte en pediatría. El objetivo de este estudio es documentar las características de los pacientes que fallecen a cargo de los equipos de cuidados paliativos pediátricos en España. Pacientes y métodos:Estudio retrospectivo, descriptivo y multicéntrico. Participaron 14 equipos de todo el territorio nacional.Resultados:Se obtuvieron datos de 164 pacientes. En la mayoría la enfermedad de base eran procesos oncológicos, neurológicos y neuromusculares. La mediana de edad al fallecimiento fue de 6,9 años (RIC: 11,2). La mediana de tiempo de seguimiento por el equipo fue de 0,3 años (RIC: 0,8 años). Los síntomas más frecuentes en la última semana de vida fueron disnea, dolor, aumento de secreciones y trastornos del sueño. El número de fármacos que se administraban a cada paciente una semana previa al fallecimiento tuvo una mediana de 6 (RIC: 4). El lugar de fallecimiento de 95 de los pacientes (57,9%) fue el hospital y de 67 (40,9%) fue su domicilio.Conclusiones:Los pacientes presentaban un amplio rango de edad y una exposición sustancial a la polifarmacia. El tiempo de seguimiento nos muestra el acceso tardío a los programas de cuidados paliativos, deberíamos hacer un esfuerzo para la introducción temprana de estos cuidados y que no quede relegada al final de vida. En España existe una distribución desigual de recursos, sin que todos los equipos tengan la posibilidad de atención domiciliaria, por lo que el lugar de fallecimiento debemos interpretarlo con cautela. (AU)

Introduction:Around 2000 children and adolescents die each year in Spain, however, we know little about the particularities of deaths in paediatrics. The purpose of this study is to document the characteristics of patients who die in the care of paediatric palliative care teams in Spain.Patients and methods:Retrospective, descriptive, multicentre study. Fourteen teams from all over the country participated.Results:Data were obtained from 164 patients. In most cases the underlying disease stemmed from oncological, neurological or neuromuscular processes. The median age at death was 6.9 years (RIC 11.2). The median follow-up time by the team was 0.3 years (RIC 0.8 years). The most frequent symptoms in the last week of life were dyspnoea, pain, increased secretions and sleep disorders. The median number of drugs administered to each patient one week prior to death was 6 (RIC 4). The place of death for 95 of the patients (57.9%) was hospital while 67 (40.9%) died at home.Conclusions:There was a wide age range of patients and they had substantial exposure to polypharmacy. The follow-up time shows that patients have late access to palliative care programmes. An effort should be made to introduce this care earlier rather than relegating it to the end of life. In Spain there is an unequal distribution of resources and not all teams can provide care at home. The place of death should be interpreted with caution. (AU)

[End of life in patients under the care of paediatric palliative care teams. Multicentre observational study]. / El final de vida en pacientes atendidos por equipos de cuidados paliativos pediátricos. Estudio observacional multicéntrico.

INTRODUCTION: Around 2000 children and adolescents die each year in Spain, however, we know little about the particularities of deaths in paediatrics. The purpose of this study is to document the characteristics of patients who die in the care of paediatric palliative care teams in Spain. PATIENTS AND METHODS: Retrospective, descriptive, multicentre study. Fourteen teams from all over the country participated. RESULTS: Data were obtained from 164 patients. In most cases the underlying disease stemmed from oncological, neurological or neuromuscular processes. The median age at death was 6.9 years (RIC 11.2). The median follow-up time by the team was 0.3 years (RIC 0.8 years). The most frequent symptoms in the last week of life were dyspnoea, pain, increased secretions and sleep disorders. The median number of drugs administered to each patient one week prior to death was 6 (RIC 4). The place of death for 95 of the patients (57.9%) was hospital while 67 (40.9%) died at home. CONCLUSIONS: There was a wide age range of patients and they had substantial exposure to polypharmacy. The follow-up time shows that patients have late access to palliative care programmes. An effort should be made to introduce this care earlier rather than relegating it to the end of life. In Spain there is an unequal distribution of resources and not all teams can provide care at home. The place of death should be interpreted with caution.

Effectiveness of a Family-Caregiver Training Program in Home-Based Pediatric Palliative Care.

Background: Pediatric palliative cares involve the whole family, along with the interdisciplinary pediatric palliative care (PPC) team. The commitment of the PPC team and the engagement of the family at different levels can play a key role in advancing a better quality of life in children and families. Method: A descriptive pre-post educational intervention study was carried out. The creation of a training program (with the term "school" used to denote this effort) strives to prepare caretakers to master the skills as well as provide support for the care of children with serious conditions requiring palliative through home-based initiatives. The analysis includes aspects of learning and satisfaction with the activity in a final sample of 14 families who had one child enrolled into a home-based palliative care program. Results: After the educational intervention in our school, the mean score of the theoretical evaluation was 9.14 points (SD 0.96), showing improvement with respect to the initial assessment, (mean diff. of +0.98 points). Although the analysis of all conceptual areas demonstrates a trend towards a positive impact of the intervention, feeding-related instruction saw the highest level of improvement, with a mean difference of +1.43 points. All enrolled parents expressed having a very positive experience during their participation in the educational program. Conclusions: The educational program showed a positive trend in the acquisition of knowledge and skills, resulting in a positive impact on the self-perception of their abilities. This psycho-educational space allowed them to share their experience of daily care for a child with complex needs with other families, showing them that they were not alone and that they could help each other.

[Descriptive analysis of palliative sedation in a pediatric palliative care unit]. / Análisis descriptivo de la sedación paliativa en una Unidad de Cuidados Paliativos Pediátricos.

INTRODUCTION: Data surrounding palliative sedation in pediatric patients is scarce. Our objective is to assess the utility of creating a quality standard for pediatric palliative sedation. MATERIAL AND METHODS: A non-systematic review of the literature was used to find recommendations for pediatric palliative sedation, after which a definition was established based on three items: (1) indication, (2) consent, and (3) application. Afterwards, a retrospective analysis of palliative sedations applied by our unit over 5 years was performed. RESULTS: Out of 163 patients, palliative sedation was applied in 20, in 17 of them by our unit (14/20 males; median: 11.9 years). Twelve patients had oncological diseases, seven had neurological conditions, and one had a polymalformative syndrome. Nine patients had more than one symptom at the time of PS initiation with pain (11/17) and dyspnoea (10/17) being the most frequent. As for the definition, only three patients achieved a global completion, with the registration of the consent, specification of refractoriness and the establishment of an adequate initial sedative dose being the areas with more possible improvement. CONCLUSIONS: The application of the definition allowed us to analyze and find areas of improvement for our clinical practice of palliative sedation in pediatric patients.

Cobertura de pacientes pediátricos con necesidades paliativas en la Comunidad de Madrid / Coverage of pediatric patients with palliative needs in the Region of Madrid

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Off-Label and Unlicensed Drugs in Pediatric Palliative Care: A Prospective Observational Study.

CONTEXT: Off-label and unlicensed use of drugs is a widespread practice in pediatric care because of the lack of specific efficacy and safety data and the absence of formulations adapted to the needs of these individuals. Pediatric patients with a life-limiting illness frequently receive drugs under these conditions, although no studies have established the prevalence of this practice. OBJECTIVES: To describe the prevalence, indications, and most common uses of off-label and unlicensed drugs in a pediatric palliative care unit (PPCU). METHODS: A prospective cross-sectional observational study carried out between January and October 2019. RESULTS: About 85 patients involving 1198 prescriptions were analyzed. A total of 39.6% were off label, and 12.9% were unlicensed. All received at least one off-label drug, with a median of five per patient (interquartile range 3-7), and 81.2% received at least one unlicensed drug. A total of 36.1% of the prescriptions were considered off label because of indication, 33.8% because of dosage, and 26.6% because of age. The main drugs used off label were oral morphine, oral levetiracetam, inhaled albuterol, sublingual ondansetron, oral tizanidine, sublingual fentanyl, and oral diazepam. The main symptoms treated with off-label drugs were dyspnea, pain, and nausea/vomiting. CONCLUSION: More than half of the prescriptions in this PPCU were off label or unlicensed. Treatment indication was one of the main reasons for off-label use. Administration of compounded preparations was common in patients with a life-limiting illness.

Ensayos clínicos y cuidados paliativos pediátricos / Clinical trials and pediatric palliative care

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