Palliative home-based care to pediatric cancer patients: characteristics and healthcare delivered.

OBJECTIVES: Cancer patients constitute an important group in pediatric palliative care. Though the patients' home is the preferred place of care, little is known about the characteristics of patients attended by units that provide home assistance. Our objective is to describe the characteristics of cancer patients and healthcare delivered by a pediatric palliative care unit with a home hospitalization program. METHODS: Retrospective study based on clinical records of deceased patients attended by the pediatric palliative care unit of Madrid over 10 years. Data collected included general characteristics, type of cancer, whether they received home assistance, place of death, healthcare delivered (hospitalizations, devices, oncological treatments…), and symptom prevalence. RESULTS: After excluding 47 patients, the clinical records of 144 patients were analyzed. The median age at referral was 9.4 years (IQR: 5.6-14.1), 61.2% were males; 44.2% had solid non-CNS tumors, 35.4% CNS tumors, and 20.4% hematological malignancies; 137 received home care with 89 not requiring further hospital admissions and 70.1% dying at home. The median follow-up time was 1.6 months (IQR: 0.5-2.9). The most used devices were venous ports (71.4%) and oxygen (49.4%); 53.5% of the patients received oncological support therapies. The most common symptoms were pain (91.8%) dyspnea (49.0%) and fatigue (46.9%). CONCLUSIONS: Home assistance was provided in a high number of patients, with a large proportion needing one or no hospital admissions and 70.1% of them dying at home. Further studies characterizing these patients and the factors which promote early access to palliative care are needed.

Ingresos hospitalarios en cuidados paliativos pediátricos: estudio retrospectivo / Hospital admissions into paediatric palliative care: A retrospective study

INTRODUCCIÓN: Los pacientes en seguimiento por unidades de cuidados paliativos pediátricos (UCPP) pueden ingresar en el hospital por distintas circunstancias. Cuentan con características dispares en sus necesidades y en las situaciones clínicas que presentan. El objetivo de este estudio es presentar datos correspondientes a los pacientes ingresados a cargo de la UCPP de la Comunidad Autónoma de Madrid. MÉTODOS: Estudio retrospectivo observacional realizado a partir de las historias clínicas de la UCPP. Periodo: enero-2011 a diciembre-2016. RESULTADOS: De los 499 pacientes seguidos en ese periodo, 166 (33%) ingresaron en alguna ocasión, generando un total de 314 episodios. El principal motivo de ingreso fueron los problemas respiratorios (34%). El motivo más frecuente de ingreso para intervención quirúrgica fue la realización de una gastrostomía (23 pacientes). En este periodo, 46 pacientes fallecieron durante el ingreso, siendo el motivo más frecuente el ingreso por problemas respiratorios (18/46), seguido de los ingresos por agonía (11/46). El 59% de los ingresos duró menos de 7 días y el 88%, 15 días o menos. CONCLUSIONES: Los motivos y las características de los ingresos hospitalarios a cargo de una UCPP son heterogéneos, siendo los motivos más frecuentes los problemas respiratorios. La duración de la estancia hospitalaria es equiparable a la de unidades de cuidados paliativos de atención aguda. La creación de unidades específicas con posibilidad de ingreso hospitalario a cargo de las mismas puede ayudar a mantener la continuidad asistencial

INTRODUCTION: Patients may be admitted to hospital by paediatric palliative care units (PPCU) for different reasons, due to their different needs and clinical problems. The objective of this study is to present the data of patients admitted to the PPCU of the Autonomous Community of Madrid. METHODS: Descriptive retrospective study was conducted by reviewing the clinical records of the PPCU between January 2011 and December 2016. RESULTS: Of 499 patients attended in this period, 166 (33%) were admitted to hospital at some point, generating a total of 314 episodes. Respiratory problems (34%) were the main cause of admission. Gastrostomy intervention (23 patients) was the commonest reason for a surgical admission. In this period, 46 patients died during hospitalisation. The highest frequencies of death, according to the admission cause, were respiratory problems (18 out 46) and end-of-life care (11 out 46). More than half (59%) of admissions lasted less than 7 days and 88% were 15 days or less. CONCLUSIONS: The causes and characteristics of the hospital admissions at a PPCU are heterogeneous, with respiratory problems being the most common cause of admission. The duration of the hospitalisation appears to be similar to that described for acute palliative care units. The creation of a specific PPCU that can refer their patients for hospital admission might help to improve continuity of care

[Hospital admissions into paediatric palliative care: A retrospective study]. / Ingresos hospitalarios en cuidados paliativos pediátricos: estudio retrospectivo.

INTRODUCTION: Patients may be admitted to hospital by paediatric palliative care units (PPCU) for different reasons, due to their different needs and clinical problems. The objective of this study is to present the data of patients admitted to the PPCU of the Autonomous Community of Madrid. METHODS: Descriptive retrospective study was conducted by reviewing the clinical records of the PPCU between January 2011 and December 2016. RESULTS: Of 499 patients attended in this period, 166 (33%) were admitted to hospital at some point, generating a total of 314 episodes. Respiratory problems (34%) were the main cause of admission. Gastrostomy intervention (23 patients) was the commonest reason for a surgical admission. In this period, 46 patients died during hospitalisation. The highest frequencies of death, according to the admission cause, were respiratory problems (18 out 46) and end-of-life care (11 out 46). More than half (59%) of admissions lasted less than 7 days and 88% were 15 days or less. CONCLUSIONS: The causes and characteristics of the hospital admissions at a PPCU are heterogeneous, with respiratory problems being the most common cause of admission. The duration of the hospitalisation appears to be similar to that described for acute palliative care units. The creation of a specific PPCU that can refer their patients for hospital admission might help to improve continuity of care.

A grounded theory study of the perceptions and meanings associated with gastrostomies among parents of children with palliative needs.

BACKGROUND: There is few literature on the difficulties and different meanings of gastrostomy tubes (GST) for parents of children with palliative needs, and what specific palliative care teams contribute to this process. AIM: To explore the process of information in the decision of performing a gastrostomy and the meanings that parents of children with palliative needs build around them. DESIGN: Semi-structured interviews which were transcribed and analysed using Grounded Theory. SETTING/PARTICIPANTS: Parents and caretakers of children admitted in Paediatric Palliative Care Unit of Madrid Autonomous Community (Spain) whose children bore a gastrostomy device. RESULTS: Two core categories arise ('Fight' and 'The child as a life-meaning generator'). In all the cases, the child supplied the meaning to go on, and the Palliative Care Unit (CPU) helped in the daily care of the child and solving problems derived from the handling of the GT. CONCLUSIONS: It is necessary to improve the process of giving bad news and to introduce models of health care that focus on parents and child as the center of palliative care. It is also necessary to develop educational programs that enable continuity of care at home for children with palliative needs.

A propósito de un caso: “Construyendo realidades: fallecer en casa” / “Constructing realities: Death at home”

El objetivo de una Unidad de Cuidados Paliativos Pediátricos es proporcionar los mejores cuidados para poder vivir con la enfermedad de la forma más humana y digna posible hasta que se produzca el fallecimiento. Para facilitar una muerte en paz es fundamental conocer de forma integral al paciente, su familia, su cultura, sus creencias y adecuar nuestra intervención a sus necesidades. Presentamos el caso de un niño que quería ser atendido en su casa pero que inicialmente parecía que no iba a hacerse realidad. El realizar una evaluación inicial de los problemas, las necesidades; establecer de forma conjunta nuestros objetivos y actuaciones; y el trabajo coordinado, permitió responder al deseo del paciente de estar en su casa, con su gente y activo el mayor tiempo posible así como la muerte sin dolor, acompañado por la familia en el domicilio (AU)

The purpose of a Pediatric Palliative Care Unit is to provide the best care to live with the disease in the most humane and dignified as possible until death occurs. To facilitate a peaceful death is important to know the patient, their family, their culture, their beliefs. We report the case of a child who wanted to be cared at home. Performing an initial assessment of the problems, needs, establish our goals and actions together, and coordinated work, allowed respond to the patient’s desire to be at home accompanied by family (AU)

Cuidados paliativos pediátricos. El afrontamiento de la muerte en el niño oncológico / Paediatric palliative care. The impact of the child dying

El proceso de adaptación psicológica a la enfermedad y muerte de un niño es difícil por la variedad de reacciones emocionales que se presentan a lo largo del proceso. Para evitar situaciones conflictivas, que pueden provocar una angustia mayor de la que la propia enfermedad conlleva, conviene que el personal que les atiende conozca estas posibles reacciones. En este artículo se describen las características del afrontamiento de la muerte en el niño y en su entorno socio-familiar y sanitario. El objetivo de una Unidad de Cuidados Paliativos Pediátricos es proporcionar los mejores cuidados para poder vivir con la enfermedad de la forma más humana y digna posible hasta que se produzca el fallecimiento (AU)

The psychological adaptation to the illness and death of a child is difficult for the variety of emotional reactions that appear along the process. To avoid difficult situations, it is helpful to know something about these possible reactions. In this article we discuss about how the children, their family and the health care team feel about death in order to deal with the child end to life. The target of a Pediatric Palliative Care Unit is to provide the best care to be able to live with the illness until the death (AU)

Proximate composition and fatty acid content of the mangrove oyster Crassostrea rhizophorae along the year seasons

Com o objetivo de determinar a composição centesimal e de ácidos graxos da ostra de mangue Crassostrea rhizophorae, amostras foram coletadas durante um ano no manguezal localizado na Barra de Guaratiba, na cidade do Rio de Janeiro, Brasil. Nenhuma diferença estatística (P>0,05) foi observada para os valores de umidade, proteína bruta, lipídio bruto e cinza, que foram em média: 82%; 9,7%; 1,7% e 3,2%, respectivamente. Por outro lado, os valores encontrados para o glicogênio foram significativamente diferentes (P<0,05) para as amostras de primavera (4,4%) e inverno (4,2%) do que para as amostras de verão (2,7%) e outono (2,9%). Os ácidos graxos saturados e poliinsaturados foram respectivamente, os principais grupos de ácidos graxos das ostras, sendo que o ácido palmítico (16:0) foi o ácido graxo mais abundante em todos as amostras de ostras coletadas. O presente estudo demonstrou que esta espécie é caracterizada tanto por uma baixa concentração de lipídios (< 2,0%) como também, por uma elevada concentração dos ácidos eicosapentaenóico (20:5n-3, EPA) e docosahexaenóico (22:6n-3, DHA). Portanto, baseado no presente resultado é possível concluir que em termos de lipídios e de ácidos graxos a composição nutricional da C.rhizophorae é recomendável para o consumo humano.

Reversal of an antihistamine-induced coma with flumazenil.

Flumazenil is a competitive antagonist with specific action at the central benzodiazepine receptor. It is used when benzodiazepine intoxication is suspected. Its use has also been reported in cannabis intoxication, chloral hydrate overdose, hepatic encephalopathy, and alcohol intoxication. We report the case of a 7-month-old male infant with a depressed level of consciousness after intentional intoxication of antihistamines, whose mental status fully recovered after administration of flumazenil. To our knowledge, this is the first case in children where flumazenil has been reported to reverse antihistamine-induced coma.