ABSTRACT
BACKGROUND: The development of palliative care in Peru remains limited, particularly for nononcological services, such as neurology. The goal of this study was to explore attitudes toward and knowledge about palliative and end-of-life care among patients, families, nurses, and doctors in a specialized neurological institute in Lima, Peru. MATERIALS AND METHODS: We used a mixed methods approach consisting of 78 surveys and 21 qualitative, semistructured interviews that were recorded, transcribed, and analyzed using thematic analysis. RESULTS: Surveys identified a substantial need for palliative care in the neurological institute (63% of doctors and 77% of nurses reported palliative care needs in >30% of their patients), and for training (82% of doctors and 69% of nurses reported inadequate palliative care education). The key themes emerging from qualitative interviews concerned transparency of communication about prognosis and end-of-life choices in neurological disease. Familiarity with advance directives was limited among both clinicians and families, and participants were divided about whether or not patients should be informed of serious diagnoses and prognoses, and who should inform them. Barriers to transparency in patient-physician communication included (1) expectation of cure; (2) physician's lack of training in communication and end-of-life care; (3) a paternalistic culture; and (4) the nature of neurological diseases. CONCLUSIONS: Our study highlights opportunities to enhance palliative care and communication education for neurology providers and the public in Peru, a country that currently has no palliative care training program and no legal basis for advance directives.
Subject(s)
Attitude of Health Personnel , Attitude to Health , Nervous System Diseases/therapy , Palliative Care , Advance Directives , Communication , Female , Humans , Interviews as Topic , Male , Middle Aged , Nurse-Patient Relations , Peru , Physician-Patient Relations , Truth DisclosureABSTRACT
La conspiración de silencio es una barrera en torno a la verdad, que puede definirse como el acuerdo tanto implícito como explícito al que llega la familia, el entorno o los profesionales de la salud, de cambiar la información que se le brinda al paciente con la finalidad de ocultarle el diagnóstico, la gravedad y el pronóstico de la situación clínica por la que está atravesando. El rol de la familia del paciente con enfermedad terminal debe ser considerado punto sumamente importante en las decisiones y acciones del personal de salud, ya que de ella depende el apoyo físico, material, psicosocial y espiritual del enfermo. La comunicación adecuada con la familia debe establecerse desde la primera consulta, aun antes de arribar a un diagnóstico, ya que permite cumplir con los objetivos del manejo multidimensional e integral de todo paciente. Es importante definir con la mayor claridad posible la información al paciente y su familia sobre el diagnóstico, enfermedad y pronóstico, y debe ejercerse receptividad plena a sus dudas, creencias, expectativas y aun los mitos o fabulaciones que todos ellos tengan respecto a la enfermedad diagnosticada. Es vital que los médicos estén adecuadamente entrenados en el manejo de información y que desarrollen habilidades de comunicación que favorezcan la adecuada adaptación del paciente y la familia al proceso clínico, desde el diagnóstico inicial hasta el duelo que sigue a la muerte del paciente, evitando de esta forma el surgimiento y desarrollo de una conspiración de silencio y sus negativas consecuencias sobre todos los involucrados
The conspiracy of silence is a barrier to the truth that can be defined as both the implicit and explicit agreement arrived at by the patient's family, his/her surroundings and the health professionals involved, changing the information provided to patients and, thus, hide the diagnosis, severity and prognosis of the disease. The role of the terminal patient´s family is essential for the health staff's decisions and actions as they are a decisive factor in the provision of physical, material, psychosocial and spiritual support. The communication between family and health professionals must be adequate from the beginning even before arriving at a diagnosis, as it will allow to comply with the objectives of a multidisciplinary and integrated management. It is important to find out what the patient and his/her family know about the diagnosis, disease and prognosis and the staff must be receptive to all their doubts, beliefs, expectations, and even myths and fabulations about the terminal disease. It is vital for physicians to be properly trained on information management, favoring the adequate family and patient´s adaptation to the disease process and the subsequent grief process in order to avoid the development of the conspiracy of silence and its negative consequences on all involved.
