Resumo Este estudo investigou o conhecimento que 55 pacientes com doenças terminais tinham sobre seu diagnóstico, prognóstico e a possibilidade de registrar seus desejos no final de vida sob a forma de diretivas antecipadas de vontade. Dos sujeitos da pesquisa, apenas um as havia registrado, e três deles, após diálogo com a pesquisadora, manifestaram interesse em formalizá-las. Os demais declararam não ter tido oportunidade de conversar sobre o tema. As decisões sobre o final da vida do enfermo invariavelmente evidenciam a subestimação de diálogo esclarecedor entre médico e paciente. Os dados do estudo sugerem que as diretivas antecipadas, embora façam parte do respeito à autonomia de vontade dos pacientes com doenças terminais, estão longe de serem efetivadas na prática, o que leva à necessidade de melhorar a comunicação entre médicos e pacientes sobre o processo de terminalidade da vida.

SUMMARY OBJECTIVE: Evaluating the degree of cognition, functionality, presence of symptoms and medications prescribed for patients under palliative home care. METHOD: Descriptive, cross-sectional study where 55 patients under palliative home care were interviewed. Cognition was evaluated using the Mini-Mental state examination (MM), with patients being separated into two groups: with preserved cognitive ability (MM>24), or altered (MM <24). The functionality was verified by the Palliative Performance Scale (PPS) and the patients were divided into two groups: PPS≤50 and PPS≥60. The symptoms presence was evaluated by ESAS (Edmonton Symptom Assessment System) being considered as mild (ESAS 1-3), moderate (ESAS 4-6) or severe (ESAS 7-10) symptoms. Medications prescribed to control the symptoms were registered. Statistical analysis used Student's t test (p <0.05). RESULTS: Most of the 55 patients were women (63.6%), 70.9% of these had MM> 24, 83.6% had PPS <50 and 78.2% presented chronic non-neoplastic degenerative disease. There was a significant relationship between PPS≤50 and MM≤24. Symptoms were present in 98% of patients. Asthenia was more frequently reported and was not treated in 67% of the cases. Severe pain was present in 27.3%: 46% without medication and 13% with medication, if necessary. Most patients with severe dyspnea used oxygen. CONCLUSIONS: Most of the analysed patients had their cognition preserved, presented low functionality and 98% reported the presence of symptoms. Severe pain was present in almost 1/3 of the patients without effective treatment. Re-evaluate palliative home care is suggested to optimize patient's quality of life.

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The main disease-related factor associated with SF-36 results in Paget's disease of bone patients was bone pain, while bone pain and deformities were associated with WHOQOL-bref.

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