Autonomy is the capacity to take decisions and undertake activities when armed with knowledge about the causes of the illness, sufficient information thereof and in the absence of duress, either internal or external. With autonomy we express our system of values and what is good for each patient is decided. The more chronic the illness of patients and the more their treatment is under question, the more autonomy is called for; this becoming greater the more information is available.
The problems that usually arise in Palliative Care, besides those typically involving care arising from the pathology in question and its medical-biological complications, are informative-communicational ones, assignation of resources and everything related to the life-death binomial. It is these factors where the level of autonomy of the patient is crucial and involving decision-making.
This is the theme of the doctoral thesis that Ana María Martínez Fernández defended at the Faculty of Medicine and Odontology at the University of the Basque Country (UPV/EHU). The research involved the study of factors influencing the development of the autonomy of the cancer patient in a clinically terminal situation, proposed a series of recommendations that contribute to improving the clinical and care tasks of the professionals who are involved with terminal cancer patients.
The PhD entitled, Factores que influyen y recomendaciones que mejoran la autonoía del paciente oncológico en situación clínica terminal (Influencing factors and recommendations that enhance the autonomy of cancer patients in clinically terminal situations), was led by the Professor of the Department of Medicine, Daniel Solano López, and received excellent cum laude.
Ana María Martínez Fernández is a graduate in Medicine from the University of the Basque Country and currently is the domiciliary Palliative Care team doctor for the Spanish Association Against Cancer in area V of Madrid.
The quest for autonomy
The objective of this research, on the one hand, was to study – using the monitoring system of terminal cancer patients - the principle of autonomy of these patients: knowing their initial situation, comparing their evolution and analysing the conditioning factors and in which the doctor intervenes directly; also knowing the degree of information about their pathology and any personal factors that also have an influence on them and, finally, knowing the attitude of the people around them. On the other hand, justifiable alternatives were put forward that help in solving any problems detected.
To this end, 126 of the 164 patients attending from January 2003 to June 2004 were studied by the Domiciliary Care Team for Terminal Cancer Patients of the Spanish Association Against Cancer (AECC) in area V of Madrid.
The study carried out enabled knowledge to be gained of aspects not generally taken into account and revealed that cancer patients in clinically terminal situations are capable of exercising autonomy if not limited by the social health environment in which they live. Moreover, they reveal certain physical and mental limitations that do not generally disable them to take decisions. They are limited in the exercise of their autonomy by the scant, if nor deficient or nonexistent information that they initially have about their illness and prognosis. “In fact, the become more autonomous after being appropriately informed”, …. explained.
The work concluded by arguing that a great many of the problems arising in clinical practice with this type of patient are resolved by incorporating conventional clinical history and a series of data or recommendations which, generally because of lack of knowledge, are not registered. For example, it is useful if the patient and carer know the prognosis and diagnosis of the illness. The medical report should indicate the level of knowledge the patient has in his or her case; if they have rejected any treatment to date, if they have signed informed consent forms and if they possess advanced care directives. The carer or family circle should be made aware if the patient has been denied information about his or her diagnosis or prognosis and if they have been let read the true medical report and, if the case arises, if the patient has been advised to have morphine administered.
During monitoring, it is advisable to register the data related to the attitude of the patients, such as their participation in the treatment, if they say goodbye to their immediate circle, and so on; the attitude of the carers (what do they say to the patients about their illness? How do they respond to their questions?, etc.); also to be taken into account are social attitudes in order to make an analysis of the people around the patient or health attitudes in order to know what information is being given to the patient about their case, the process, and so on.
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