ABSTRACT
El hecho de comunicar a un paciente su diagnóstico cuando éste es desfavorable, se convierte en un asunto sumamente humano. La bioética y la legislación protege de este derecho a la información. El objetivo del estudio es evaluar el grado de información de los pacientes al ser incluidos en el programa de cuidados paliativos domiciliarios. Se ha realizado un estudio cuantitativo, descriptivo, retrospectivo, transversal. Año de estudio 2012 en pacientes diagnosticados de procesos de enfermedad avanzada terminal valorados por el Equipo de Soporte de Atención Paliativa Domiciliaria, de la Dirección Asistencial Norte de la Comunidad de Madrid. La muestra fue de 184 pacientes. Analizando la relación entre el grado de información y la edad categorizada, existiendo diferencias estadísticamente significativas (p<0,01) siendo el grupo de edad en el que hay más pacientes correctamente informados el de ≤65 años con un porcentaje del 95,3%. Estaban más informados los pacientes con un Pfeiffer <4 en el 89,3% de los casos (p< 0,01). Más de la mitad de los pacientes habían recibido información acerca de su enfermedad y en mayor proporción completa. Con más frecuencia fueron varones con edad comprendida entre 76 y 85 años, con patología oncológica, presentando mal estado funcional pero no presentaron deterioro cognitivo. La información de la familia era mayor que la del propio paciente y en mayor grado era completa. Los factores relacionados con un mejor nivel de información fueron la edad ≤65años y la ausencia de deterioro cognitivo. El lugar predominante de fallecimiento en el seguimiento fue el domicilio
The fact of communicating to a patient his or her diagnosis when it is unfavourable, this becomes a really human issue. The bioethics and the legislation protect this right of information. The aim of this study is to evaluate the degree of information of patients when they are included in the home palliative care program. This is a quantitative, descriptive, retrospective and transversal study. The year of the study is 2012 in patients diagnosed with advanced terminal illnesses processes valued by the Team of Home Palliative Attention Support, of the North Welfare Direction of the Community of Madrid. The sample size was 184 patients. Analysing the relationship between the degree of information and the age, existing differences statistically significant (p<0,01) being the group in which there are more patients correctly informed the one were the age is ≤65 years old with a percentage of 95,3%. The patients with a Pfeiffer <4 in the 89,3% of the cases (p<0,01) were more informed. More than half the patients had received some information about their illness and within that half there is higher proportion of people who received complete information. The more frequent were male patients with age between 76 and 85 with oncologic pathology, showing a bad functional condition but didnt present cognitive deterioration. The information received by the family was more complete that the one the own patient knew. The factors related with a better degree of information were being younger than 65 and a lack of cognitive deterioration. The predominant place of the decease in the monitoring of the patient was the their home
Subject(s)
Humans , Male , Female , Middle Aged , Aged , Aged, 80 and over , Palliative Care/ethics , Information Management/ethics , Terminal Care/ethics , Bioethics , Home Care Services/ethics , Retrospective Studies , Cross-Sectional Studies/ethicsABSTRACT
The fact of communicating to a patient his or her diagnosis when it is unfavourable, this becomes a really human issue. The bioethics and the legislation protect this right of information. The aim of this study is to evaluate the degree of information of patients when they are included in the home palliative care program. This is a quantitative, descriptive, retrospective and transversal study. The year of the study is 2012 in patients diagnosed with advanced terminal illnesses processes valued by the Team of Home Palliative Attention Support, of the North Welfare Direction of the Community of Madrid. The sample size was 184 patients. Analysing the relationship between the degree of information and the age, existing differences statistically significant (p ã0.01)being the group in which there are more patients correctly informed the one were the age is ≤65 years old with a percentage of 95,3%. The patients with a Pfeifferã4 in the 89,3% of the cases (p ã0.01) were more informed. More than half the patients had received some information about their illness and within that half there is higher proportion of people who received complete information. The more frequent were male patients with age between 76 and 85 with oncologic pathology, showing a bad functional condition but didn't present cognitive deterioration. The information received by the family was more complete that the one the own patient knew. The factors related with a better degree of information were being younger than 65 and a lack of cognitive deterioration. The predominant place of the decease in the monitoring of the patient was the their home.
Subject(s)
Bioethical Issues , Critical Illness , Palliative Care/ethics , Truth Disclosure/ethics , Cross-Sectional Studies , Female , Humans , Male , Retrospective Studies , SpainABSTRACT
Objetivos: describir el perfil de los pacientes con enfermedades neurodegenerativas (END) en fase avanzada en un equipo de atención domiciliaria.Analizar los principales problemas de salud y conocer el lugar de éxitus.Material y métodos: estudio descriptivo transversal de enfermos atendidos en un Equipo de Soporte de Atención Domiciliaria (ESAD) del Área 5 de Madrid, en el período de 2001 a 2008. Se analizó: edad, sexo, diagnóstico de enfermedad neurológica, procedencia de la derivación, días de seguimiento, número de visitas, aspectos sociales, índice de Barthel,número de fármacos, problemas detectados y lugar de éxitus.Resultados: se evaluaron un total de 2.738 pacientes. 25 (0,91%) fueron incluidos por presentar una END en fase avanzada. La edad media erade 62,2 años, un 60% eran mujeres. Un 64% estaba diagnosticado de esclerosis lateral amiotrófica. El seguimiento se estimó en 98,2 días por paciente con una media de 8,7 visitas. Tenían un índice de Barthel en primera visita de 22,4, siendo el cónyuge el cuidador principal. Al finalizar el estudio, 22 pacientes habían fallecido, siendo el domicilio el lugar de preferencia para el éxitus (72,7%). Los problemas más frecuentes durante el seguimiento fueron disfagia (92%) y disnea (76%).Conclusiones: el perfil del paciente con END es el de una mujer de mediana edad con deterioro funcional severo cuyo cuidador principal es el cónyuge.Los principales problemas detectados fueron disfagia y disnea. Aproximadamente,tres de cada cuatro pacientes fallecieron en el domicilio (AU)
Objectives: to describe the profile of patients with advanced stage neuro -degenerative diseases in a home care team. To analyse the primary health problems and to determine the place of death.Material and methods: cross-sectional descriptive study of patients seen in a Home Care Support Team (HCST) of Area 5 of Madrid, in thetime period between 2001 and 2008. The following variables were analysed: age, sex, diagnosis of neurological disease, origin of the referral,follow-up days, number of visits, social aspects, Barthels index,number of drugs, detected problems and place of death.Results: a total of 2.738 patients were evaluated. 25 (0,91%) were included for presenting an advanced NDD. Mean age was 62,2% years,and 60% were women. 64% were diagnosed with amyotrophic lateral sclerosis.The follow-up was estimated to be 98,2 days per patient with amean of 8,7 visits. On the first visit patients Barthel index was 22,4, thespouse being the primary caregiver. By the end of the study, 22 patients had died, the home being the place of preference for exitus (72,7%). Themost frequent problems during follow-up were dysphagia (92%) and dyspnoea (76%).Conclusions: the profile of the patient with NDD is a middle-aged woman with severe functional deterioration whose main caregiver is her spouse.The main problems detected were dysphagia and dyspnoea. Approximately three of every four patients passed away in their home (AU)
