In this article, we investigate the role of scientific and patient narratives on perceptions of the medical debate around gestational diabetes testing. Among medical scientists, we show that the narrative surrounding GDM testing affirms that future research and data will lead to medical consensus. We call this narrative trajectory the “deferred quest.” For patients, however, diagnosis and their subsequent discovery that biomedicine does not speak in one voice ruptures their trust in medical authority. This new distrust creates space for patients (...) to develop a Frankian quest narrative where they become the protagonist in their story. Additionally, across these different narratives, we observe how character is constructed and employed to negotiate trust. We conclude that healthcare providers should assess the narrative trajectory adopted by patients after diagnosis. Also, we suggest that providers acknowledge the lack of medical consensus to their patients. This veracity would foster women’s sense of trust in their provider as well as allow women to be active interlocutors in a debate that ultimately plays out in their deliberation about their body, pregnancy, and risk. (shrink)

How should we respond to patients who do not wish to take on the responsibility and burdens of making decisions about their own care? In this paper, we argue that existing models of decision-making in modern healthcare are ill-equipped to cope with such patients and should be supplemented by an “appointed fiduciary” model where decision-making authority is formally transferred to a medical professional. Healthcare decisions are often complex and for patients can come at time of vulnerability. While this does not (...) undermine their capacity, it can be excessively burdensome. Most existing models of decision-making mandate that patients with capacity must retain ultimate responsibility for decisions. An appointed fiduciary model provides a formalized mechanism through which those few patients who wish to defer responsibility can hand over decision-making authority. By providing a formal structure for deferring to an appointed fiduciary, the confusions and risks of the informal transfers that can occur in practice are avoided. Finally, we note how appropriate governance and law can provide safeguards against risks to the welfare of patients and medical professionals. -/- . (shrink)

This paper clarifies some of the longstanding difficulties in negotiating Do Not Resuscitate Orders by reframing the source of the dilemmas as not residing with either the patient or the physician but with their relationship. The recommendations are low cost and low-tech ways of making major improvements to the care and quality of life of the most ill patients in hospital. With impending physician-assisted death legislation there is an urgency to find more efficient and beneficial ways for clinicians and patients (...) to address resuscitation issues at the bedside. Paradigmatic shifts in the nature of the patient-physician relationship will need to be encouraged by the larger community. These encouraged shifts address the concepts of passive/inferior patient – active/superior physician, patient ownership of and access to all their health care information, and treating the patient as a major participant in the delivery of health care. These recommended changes will not in themselves make any patient, physician or other healthcare provider more humane and open in the patient’s final days. The goal, instead, is to have changes to the context of the discussion provide an encouraging environment for more open communication and a balanced relationship among participants with the patient being the most important. (shrink)