An ethical conflict arises when we must perform research in the interest of future patients, but that this may occasionally injure the interests of today''s patients. In the case of cognitively impaired persons, the question arises whether it is compatible with humane healthcare not only to treat, but also to use these patients for research purposes. Some bioethicists and theologians have formulated a general duty of solidarity, also pertaining to cognitively impaired persons, as a justification for research on these persons. (...) If one examines this thesis from the theory of justice according to John Rawls, it is revealed that such a duty of solidarity cannot necessarily be extrapolated from Rawls' conception of justice. This is at least true of Rawls' difference principle, because accordingto the difference principle only those measures are justifiable which serve the interest of the respective least well off. Those measures which would engender additional injury for the least well off could not be balanced by any utility according to Rawls. However, John Rawls' difference principle is subordinate to the first principle, which is that each person has an equal right to the most extensive basic liberty compatible with the same liberty for others. These primary goods are determined by the freedom and integrity of the person. This integrity of decisionally impaired persons would be in danger if one would abstain from research and thus forego the increase in knowledge related to their disease. Thus one could conclude, at least from Rawls' first principle, that society must take on a duty to guarantee the degrees of freedom for cognitively impaired persons and thus also support the efforts for their healing. (shrink)

Apresentam-se os resultados clínicos principais de uma primeira investigação efectuada a familiares de doentes sob tratamento paliativo no domicílio da área de Lisboa, com o instrumento de medida da satisfação SERVQUAL Modificado. Dos 58 familiares/doentes que responderam ao questionário apenas uma minona estava insatisfeita (uma classe de 5 indivíduos mostra-se francamente insatisfeita), uma classe de 15 estava moderadamente satisfeita, havendo 38 individuos fortemente satisfeitos com a qualidade e prontidäo dos serviços prestados. Porém urna percentagem elevada de doentes, segundo a opinião (...) retrospectiva dos cuidadores, faleceu com sintomatologia agravada, nomeadamente dores (60%), obstipação (67%) e depressão/ansiedade (43%). Discute-se a consistência e validade do questionáno SERVQUAL Modificado, contextualizam-se os resultados no que é o standard da prática da MCP e integram-se na promoção da dignidade humana no fim da vida. We present the main clinical findings of research on palliative home care, carried out among relatives of patients in the Lisbon area. An adapted version of SERVQUAL was used. Of a total of 58 carers surveyed only a small number (5) was unsatisfied 15 were only moderately satisfied. 38 family carers were strongly satisfied with the services. Yet, a high percentage of patients, as viewed in retrospect by their relatives died with some aggravated symptoms: 60% with more pain, 67% constipation, and 43% anxiety/depression. We discuss the consistency and validity of this adapted SERVQUAL tool and the main results are contextualized beanng in mind the standard practice of palliative medicine and the pursuit of human dignity in death. (shrink)

Apresentamos um resumo do desenvolvimento e do contexto institucional do Projecto Humanização dos Cuidados Paliativos em Contexto Domiciliário, aprovado e financiado pela Fundação Calouste Gulbenkian. Utilizam-se largamente os próprios documentos que o justificaram e os relatórios oficiais para dar uma imagem vivida, realista e técnica das dificuldades da profissionalização e reforma dos Cuidados Paliativos, mesmo quando integrada em acções de formação num serviço de um Centro de Tratamento Compreensivo do Cancro. We put forward a synopsis of the development and institutional (...) context of the Project Humanização dos Cuidados Paliativos em Contexto Domiciliário, approved and financed by the Calouste Gulbenkian Foundation. The groundwork documents are widely used as well as official reports so as to convey a lively, realistic and technical image arising from professionalizing and reforming Palliative Medicine even when it is based on in-service training programmes in an Comprehensive Cancer Center. (shrink)