Anastasia Vishnevetsky1,2,3, Carla Zapata Del Mar4, Juan Luis Cam5, Mario Cornejo-Olivas3, Claire J Creutzfeldt6. 1. 1 Northern Pacific Global Health Consortium Fogarty Fellow , Lima, Peru . 2. 2 Perelman School of Medicine at the University of Pennsylvania , Philadelphia, Pennsylvania. 3. 3 Neurogenetics Research Center, Instituto Nacional de Ciencias Neurológicas , Lima, Peru . 4. 4 Instituto Nacional de Enfermedades Neoplásicas , Lima, Peru . 5. 5 Unidad de Cuidados Intensivos, Instituto Nacional de Ciencias Neurológicas , Lima, Peru . 6. 6 Department of Neurology, University of Washington , Seattle, Washington.
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.
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.
Entities:
Keywords:
Latin America; Peru; communication; end of life; neurology; neuropalliative care; palliative care; transparency
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