Fatigue is one of the most frequent symptoms in palliative care patients, reported in .80% of cancer patients and in up to 99% of patients following radio- or chemotherapy. Fatigue also plays a major role in palliative care for noncancer patients, with large percentages of patients with HIV, multiple sclerosis, chronic obstructive pulmonary disease or heart failure reporting fatigue.This paper presents the position of an expert working group of the European Association for Palliative Care (EAPC), evaluating the available evidence on diagnosis and treatment of fatigue in palliative care patients and providing the basis for future discussions. As the expert group feels that culture and language influence the approach to fatigue in different European countries, a focus was on cultural issues in the assessment and treatment of fatigue in palliative care. As a working definition, fatigue was defined as a subjective feeling of tiredness, weakness or lack of energy. Qualitative differences between fatigue in cancer patients and in healthy controls have been proposed, but these differences seem to be only an expression of the overwhelming intensity of cancer-related fatigue. The pathophysiology of fatigue in palliative care patients is not fully understood. For a systematic approach, primary fatigue, most probably related to high load of proinflammatory cytokines and secondary fatigue from concurrent syndromes and comorbidities may be differentiated. Fatigue is generally recognized as a multidimensional construct, with a physical and cognitive dimension acknowledged by all authors. As fatigue is an inherent word only in the English and French language, but not in other European languages, screening for fatigue should include questions on weakness as a paraphrase for the physical dimension and on tiredness as a paraphrase for the cognitive dimension. Treatment of fatigue should include causal interventions for secondary fatigue and symptomatic treatment with pharmacological and nonpharmacological interventions. Strong evidence has been accumulated that aerobic exercise will reduce fatigue levels in cancer survivors and patients receiving cancer treatment. In the final stage of life, fatigue may provide protection and shielding from suffering for the patient and thus treatment may be detrimental. Identification of the time point, where treatment of fatigue is no longer indicated is important to alleviate distress at the end of life. Palliative Medicine 2008;22: 13—22.

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.

A 22-year-old woman with nodular sclerosis type II Hodgkin lymphoma diagnosed in June 2001. She initially underwent chemotherapy with 6 cycles of ABVD (adriamycin, bleomycin, vincristine, dacarbazine) regimen, leading to clinical remission. As it relapsed, she was again treated with 2 different chemotherapy regimens. In November 2003, she underwent bone marrow autotransplantation, but it relapsed after 2 months. After that, she was treated with chemotherapy in monotherapy until November 2005. In December 2005, she was referred to palliative care. Her main symptom was very severe pruritus that interfered with all aspects of her life, making her scratch continuously and interfering in all aspects of her life. She was treated with loratadine, hydroxyzine, prednisolone, paroxetine, mirtazapine, cimetidine, and ondansetron, individually and in various combinations. She also underwent ultraviolet phototherapy. All trials failed and her pruritus remained at level 8 of 10 most of the time. In April 2006, she started on thalidomide, 200 mg at night. The pruritus significantly improved to a level of 3 of 10 but did not disappear completely. She was at last able to sleep properly at night. She remained with a low level of pruritus until her death in July 2008, at the same dose of thalidomide.

The disclosure of a diagnosis of cancer to patients is a controversial matter. There have been major differences in practice concerning this issue through time and between cultures. A questionnaire was sent to the doctors of the Oporto Centre of the Portuguese Institute of Oncology in order to assess their attitudes. We received 45 responses (40%) from the 113 questionnaires sent. Of these, 32 (71%) said that they disclose the diagnosis as a general policy or at the patients' request, and 13 (29%) disclose it rarely or not at all. The most frequent reason indicated by these 13 physicians was that the disclosure might damage the patients psychologically. Forty-four (98%) doctors inform the family of the diagnosis. Thirty-nine (87%) think that patients are satisfied with the information provided. This study was carried out in one oncological centre only, so it is inappropriate to conclude that this is what happens throughout Portugal. As far as we know, this is the first study in Portugal addressing this area of practice. This subject is a very important topic of research both in Portugal and in other countries, as many published recommendations are not research based.