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Breaking bad news: experiences and preferences of advanced cancer patients at a Portuguese oncology centrePalliative Care Unit, Portuguese Institute of Oncology, Oporto, ferrazg{at}netcabo.pt
Palliative Care Unit, Portuguese Institute of Oncology, Oporto
Palliative Care Unit, Portuguese Institute of Oncology, Oporto
Palliative Care Unit, Portuguese Institute of Oncology, Oporto
Palliative Care Unit, Portuguese Institute of Oncology, Oporto
Palliative Care Unit, Portuguese Institute of Oncology, Oporto The disclosure of information to patients about diagnosis and prognosis and other aspects of care is still a matter of debate. We have conducted a study in advanced cancer patients about their experiences and preferences concerning this issue. A questionnaire was developed and completed during the first appointment in the outpatient clinic of an oncology centre's palliative care unit, before the patient had any contact with the staff of the unit. The study was conducted on a convenience sample of 47 patients. We found that 34 (72%) of those patients thought they had been informed of their diagnosis, most of them by the hospital doctor. However, not all stated the diagnosis in a manner clearly showing that they were aware of the nature of their disease. Most patients were with a family member when the diagnosis was disclosed, which is what the majority had preferred. Of the 13 uniformed patients, only one preferred to remain uninformed. Most patients (89%) participated in decisions concerning treatment, although only 68% thought they should have participated. Some 39 patients (83%) were informed that they were being referred to the palliative care unit, but surprisingly only eight had received an explanation of the unit's function. We concluded that, although most patients had been informed of their disease, there remains many problems, the most important of which, in our view, is the difference between the information provided and the patients' needs. A revelação da informação sobre o diagnóstico o prognóstico e outros aspectos dos cuidados é ainda um assunto em debate. Realizámos um estudo em doentes com cancro avançado sobre as suas experiências e preferências no que diz respeito a este tema. Foi desenvolvido um questionário que foi aplicado na primeira consulta externa de uma unidade de cuidados paliativos de um centro oncológico, antes de terem contacto com o pessoal da unidade. O estudo foi realizado numa amostra de conveniência de 47 doentes. Constatámos que 34 (72%) desses doentes pensavam que tinham sido informados do seu diagnóstico, a maioria pelo médico do hospital. Contudo, nem todos nomearam o diagnóstico de um modo que mostrasse claramente que tinham noção da natureza da sua doença. A maioria dos doentes estava com um familiar quando o diagnóstico foi revelado e era assim que a maior parte preferia. Dos 13 doentes não informados só um preferia manter-se sem informação. A maior parte dos doentes (89%) participou nas decisões terapêuticas, embora só 68% pensasse que devia ter participado. Trinta e nove doentes (83%) foram informados de que tinham sido referenciados para a unidade de cuidados paliativos, mas surpreendentemente só oito tinham tido uma explicação sobre a função da unidade. Concluímos que embora a maioria dos doentes tenha sido informada da sua doença há ainda muitos problemas, sendo o mais importante, do nosso ponto de vista, a diferença entre a informação prestada e as necessidades dos doentes.
Key Words: breaking bad news • cancer patients • cultural issues • information disclosure • palliative care patients
Palliative Medicine, Vol. 19, No. 7,
526-531 (2005) This article has been cited by other articles:
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