Portal de Periódicos da CAPES

PALLIATIVE CARE AND SEVERE DEMENTIA

1999; Wiley; Volume: 47; Issue: 3 Linguagem: Inglês

10.1111/j.1532-5415.1999.tb03013.x

1532-5415

Marie‐Claire Van Nes, Jean‐Pierre Michel,

Health Systems, Economic Evaluations, Quality of Life

To the Editor: The paper by Baskin et al.1 rightly underlines the need for research in relation to severe dementia. However, it raises several questions, perhaps because the design of their study was mentioned only briefly. Who gave the information to the relative? Was this information structured, and was it readily understandable? Was the surrogate asked to reformulate the information received? Randomized controlled trials are the gold standard for quantitative research, but there are legitimate concerns about such trials in severe dementia. As stated by Cassel, “Justification of randomization is difficult for non-researchers to understand and may lead to suspiciousness and distrust… “.2 In this specific case, between what treatments exactly the patients were randomized is not clear. It says palliative care (PC) compared with usual hospital care. Is the latter possibly excessive care out of ignorance of palliative medicine? Almost half their patients were admitted with infections. Fabiszweski et al.3 demonstrated that patients with Alzheimer's disease receiving antibiotics for fevers had no survival advantage over those treated with palliative measures alone. In many countries, PC is now considered good medical practice for several categories of patients, including dementia sufferers. The goal of PC is the achievement of the best quality of life for patients and their relatives. Patients can benefit from the supportive aspects of PC even when still receiving curative treatment.4 With these arguments in mind, is it still ethically acceptable to randomize patients between PC where appropriate and the usual care delivered so far? There are indeed ethical consequences when withholding potentially beneficial treatment from subjects in the control group.5 If 10% of the surrogates could not understand the implications of palliative care, was it because of a lack of intellectual capacity or bewilderment that anything other than comfort care could be offered? When dealing with patients with severe dementia, we are faced with the question of what constitutes futile treatment, or at least inappropriate treatment under the circumstances.6 The surrogates may have felt that they were given the choice between futility and PC. Qualitative research could overcome some of the difficulties mentioned by the authors; it is another form of assessing the adequacy of the care offered.7