Negotiating the turning point in the transition from curative to palliative treatment: a linguistic analysis of medical records of dying patients.

BACKGROUND: Many deaths in Norway occur in medical wards organized to provide curative treatment. Still, medical departments are obliged to meet the needs of patients at the end of life. Here, we analyse the electronic patient record regarding documentation of the transition from curative to palliative care (i.e. the 'turning point'). Considering the consequences of these decisions for patients, they have received surprisingly little attention from researchers. This study aims to investigate how the patient record denotes reasons for the shift from curative treatment to palliation and how texts involve voices of the patient and their families. METHODS: The study comprised excerpts from electronic patient records retrieved from medical wards in three urban hospitals in Norway. We executed a retrospective analysis of anonymized extracts from 16 electronic patient records, searching for documentation on the transition from curative to palliative care. RESULTS: In the development of the turning point, the texts usually shift from statements about the patient's clinical status and technical findings to displaying uncertainty and openness to negotiation with different textual voices. This shift may represent a need to align or harmonize the attitudes of colleagues, family, and patient towards the turning-point decision. The patient's voice is mostly absent or reported only briefly when, in their notes, nurses gave an account of the patient's opinion. None of the physicians' notes provided a detailed account of patient attitudes, wishes, and experiences. CONCLUSION: In this article, we have analysed textual representations of patient transitions from curative to end-of-life care. The 'reality' behind the text has not been our concern. As the only documentation left, the patient record is an adequate basis for considering how patients are estimated and cared for in their last days of life.

Transition guidelines: An important step in the future care for childhood cancer survivors. A comprehensive definition as groundwork.

Evidence-based clinical practice guidelines are essential to ensure that childhood cancer survivors at risk of chronic health conditions receive effective long-term follow-up care. However, adult survivors of childhood cancer are not always engaged in recommended health promotion and follow-up practices, as many centres do not have a formal transition programme that prepares survivors and their families for successful transfer from child-centred to adult-oriented healthcare. The need for a specific pan-European guideline for the transition of care for childhood cancer survivors has been recognised. The first step is to define the concept of transition of care for survivors of childhood cancer based on existing evidence.

Transición hacia la edad adulta de pacientes con ventilación mecánica domiciliaria: descripción y resultados de una consulta multidisciplinar / No disponible

Introducción: Los avances en la medicina han aumentado la supervivencia de niños con neumopatías crónicas graves. Estos pacientes tienen riesgo de la interrupción de cuidados sanitarios si no son atendidos por programas de adultos. Describimos el funcionamiento general y características de pacientes de una Consulta de Transición de Ventilación Mecánica Domiciliaria (CTVMD). Métodos: Estudio observacional de la actividad de la CTVMD desde mayo del 2012, hasta diciembre del 2015. La CTVMD está conformada por dos pediatras neumólogos, dos neumólogos de adultos, un otorrinolaringólogo y una enfermera. Se registraron datos antropométricos, fecha de transición, de inicio de Ventilación Mecánica Domiciliaria (VMD), y datos clínicos. Desde los 14 años, y durante un periodo de 1 a 2 años, estos pacientes fueron valorados en la CTVMD de forma simultánea por profesionales pediátricos y de adultos hasta que fueron definitivamente transferidos a la consulta de adultos. Resultados: Durante este período 17 pacientes fueron valorados en la CTVMD. Catorce varones (82%), con 16,29 ± 1,49 años de edad en el momento de la transición, y 16,75 ± 1,98 años al inicio de la VMD. La patología subyacente más frecuente fue la neuromuscular (65%), luego la toracógena (17%), y la hipoventilación central (6%). Once pacientes recibían soporte respiratorio (64,7%), todos en modalidad no invasiva. De ellos en 7 (63,6%) se inició durante la transición. Conclusiones: La mayor parte de los pacientes han iniciado la VMD en la adolescencia o la edad adulta, cuando ya han pasado a la consulta de adultos. Un enfoque multidisciplinar de la transición puede evitar la pérdida de cuidados sanitarios en estos pacientes

Introduction: Medical advances have improved the supervivence of children with severe chronic respiratory diseases. These patients are in risk of sanitary care interruption if not adapted in adults programs. We describe the general functioning and characteristics of patients in a Home Mechanical Ventilation Transition Practice (HMVTP). Methods: Observational study about the activity of HMVTP, since May 2012 to December 2015. HMVTP team is conformed by two pediatricians pulmonologists, two adults pulmonologists, one ear nose throat specialist and one nurse. Anthropometric data, transition date, NIV adaptation date and clinical data were collected. Since age 14 and through a period of 1-2 years, these patients were evaluated in the HMVTP simultaneously by pediatricians and adults specialists, till theyre final transference to adults practice. Results: During the study period 17 patients were evaluated in HMVTP, 14 were male (82%), with 16,29 ± 1,49 years old in the momento of transition, and 16,75 ± 1,98 years old at the NIV adaptation. Undelying most frequent respiratory conditions were neuromuscular diseases (65%), thoracic anomalies (17%) and central hypoventilation (6%). 11 patients were treated with NIV (64,7%), and 7 of them were adapted to NIV after transition (63,6%). Conclusions: Most patients have been adapted to MV in the adulthood, after they have been transitioned from pediatrics to adults practice. A multidisciplinary approach of this transition may avoid the loss of sanitary care in these patients