Resumen de La suspensión de la Diálisis en pacientes con Insuficiencia Renal Crónica Avanzada: ¿Qué opinan los enfermos?

Iñaki Saralegui Reta, Arantza Arrausi Larrea, Oscar García Uriarte, Elena Montoya Argote, Yolanda Martínez Martínez, Carmen Robledo Zulet, Magdalena Berasategui Burguera, Begoña Capillas Echevarria

• español

  El proceso de voluntades anticipadas permite a los pacientes dar a conocer sus preferencias. Método: estudio cualitativo de subgrupos homogéneos con pacientes con enfermedad renal crónica en programa de diálisis a través de entrevistas semiestructuradas, con el objetivo de conocer su deseo de participar en la toma de decisiones sanitarias, en particular las relacionadas con el final de la vida. Resultados: de mayo a diciembre de 2012 se entrevistaron a catorce pacientes, con una mediana de edad de 66 años. Creen que reciben una información adecuada, pero reconocen que no se les habla sobre el final de la vida o la retirada de diálisis. Creen que los médicos no hablan de ello porque están centrados en otras cuestiones y no quieren entristecerles. Quieren participar en la toma de decisiones y expresar sus preferencias. En caso de deterioro neurológico severo preferirían suspender la diálisis y recibir tratamiento para no tener dolor, en su casa si es posible. Sería conveniente integrar los cuidados paliativos en la asistencia de los pacientes en diálisis.

• English

  Advance Care Planning (ACP) helps communicate patients’ end-of-life care, particularly for older patients.

  Method: prospective qualitative study carried out on selected ESRD patients from a dialysis unit. The aim was to determine what was most important to the patient, if they wanted to participate in decision-making process and what degree of functional impairment they would consider intolerable. Two semi-structured interviews with each patient were performed, including their relatives. Results: from May to December 2012 fourteen patients with an average age of 66 years were interviewed. They believe that the information process is adecuate, but there is no information about the plan of care if a trasplant is not a real option. They would like to participate in decisions concerning their care and end-of-life. They would want to keep on with dialysis treatment while their quality of life continues to be acceptable for them. Respecting end-of-life care, dying without pain and to be cared for at home are the most important points for them. Patients think that doctors don´t speak to them about end-of-life because they are focused on other aspects of care. Conclusion: although there are great opportunities to talk with ESRD patients about end-of-life care this is often not done. In cases with severe cognitive impairment they would prefer to withdraw dialysis. Then they wish to receive care at home to relieve suffering or pain. The best way to achieve this is by integrating palliative care into dialysis units