Who decides? The role of the family in the informed decision in Mexican cancer patients

Eubios Journal of Asian and International Bioethics 23 (1):2-8 (2013)
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Abstract

Worldwide, obtaining valid informed consent prior to carrying out medical, therapeutic, and diagnostic procedures has long been recognized as an elementary step in fulfilling the physician’s obligations towards the patient. Obtaining this consent is essential in building a successful physician-patient relationship and increases patient satisfaction and compliance with treatment. However, in Mexico, as relatives become the main decision-makers, often influenced by the family’s economic situation; the real and effective application of concepts such as informed consent and patient autonomy is questionable.Methods: To gain insight concerning the type of patient seen at this cancer hospital, we studied the socio-economic characteristics of 339 randomly selected patients seen during 2007 contained in each individual electronic chart. Confidentiality of the information was guaranteed by limited access to the charts. This initial information provided us with some insight for designing a semi-structured questionnaire to be applied in focus-groups and interviews.Patients invited to the focus groups were randomly selected in advance by the Institution’s social workers. Group conformation was unsystematic and included eight patients who were waiting for consultation and/or out-patient chemotherapy/radiotherapy the day the focus group was planned to take place. Selection of family members was managed likewise. Most of the times, these were not related to the patients participating in the same focus group. Four groups of eight patients each and two groups of eight relatives were made up. After explaining the purpose of the research and the procedures to be employed, we obtained verbal permission to tape the interviews. Questions with regards to the information provided on the patient’s disease, treatments, prognosis and disease stage, the name of the physician, the definition of “informed consent”, etc., were posed, and each patient or relative was encouraged to participate. A final comment was allowed.Results: The information obtained from the initial chart evaluation showed that 20% of the patients were illiterate, and 50% had six or fewer years of education. The daily family income of over 50% of the patients seen at the Hospital was $2.00 U.S. dollars or less.Focus group interviews showed that the patient’s need for information changed along with the disease. However, poor understanding of their disease and treatment was evident. At all times, patients were grateful to their physicians and mentioned that they had signed informed consent. The main concerns of the relatives were financially related which in turn influenced their decision making regarding treatment.Discussion: This study shows that the cornerstone of patient autonomy in terms of the patient’s right to self-determination in the West may be different from Mexican family-based decision-making. During interviews it was clear that the patients’ sole concern was “the disease” in terms of physical pain and life expectancy. None played an active role in treatment decisions, financial arrangements, or the long-term socioeconomic consequences for themselves or their families. Most of the decisions were influenced by family members. Poor health literacy should be acknowledged by physicians, and proper measures should be implemented to improve physician-patient communication. At present, the validity of informed consent is questionable

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