From the patients' perspective

Facing a diagnosis of cancer can be psychologically devastating. The state of mind of most patients evolves through several phases 76: denial, then “why me?”" (crying, anger, and rage), dejection and depression (withdrawal and fear), often followed by a resolute determination to “fight” and, towards the end, withdrawal or inner peace and the acceptance of death. Thus, it is not surprising that most patients opt for treatment: any treatment that promises benefits and offers some hope. This forward-looking fighting spirit, anchored on the primeval human instinct of self-preservation, often leads to a selective understanding of information disclosed by the physician; retaining positive elements while rejecting or not registering negative ones. Indeed, even in the US and other Western societies where “breaking badnews” has become a largely accepted practice patient comprehension of treatment risks and benefits is heavily influenced by diverse factors. These include: the content of the disclosure (thoroughness, clarity, and specificity of the language used); the disclosure venue and timing (hospital, office, and context settings); and the level of personal interest and empathy conveyed by the physician. Conversely, in many regions of the world physicians often censor the information shared with cancer patients in misguided attempts to protect them from the potential emotional or psychological harm of bad news. This attempt to shelter patients has the unintended consequence of increasing fear and anxiety, and of depriving them of the empowering feeling conferred by their active participation in the decision-making process and in their own care. In societies where disclosing bad news is accepted practice, patients often control the type and amount of medical information disclosed to them depending on their level of anxiety, ability to cope, and other personal factors. For example, while some patients demand full disclosure in order to actively participate in their own care, patients with the greatest fear of death and a perception of poor prognosis intuitively prefer minimal disclosure, relinquishing all decisions to the physician. In the end, most cancer patients defer to their physicians the choice of therapy, especially when treatment recommendations are presented with conviction. In order to bring into focus the issue of physician-patient communications and to explore their impact on treatment decisions and their legal implications, a clear distinction must be drawn between medical research undertaken within the framework of clinical trials and patient care delivery in the community setting. This is necessary because, as research experiments conducted on human subjects, clinical trials are regulated by Federal laws that require all human research be conducted according to basic ethical principles that ensure respect for the individual, beneficence, and justice, and that participation be informed, voluntary, and not influenced or coerced in any way. In contrast, medical practice in the community setting follows informal standard of care guidelines.