When neurologist and patient disagree on reasonable risk: new challenges in prescribing for patients with multiple sclerosis

Abstract

New more powerful therapies for the treatment of multiple sclerosis may also confer a potential for unprecedented life-endangering side effects. How does a physician respond to a patient’s request for a treatment the benefit of which cannot be clearly established as worth its risk? The current challenge with prescription of natalizumab (Tysabri®, Biogen Idec) is used to illustrate how this conflict creates an opportunity to re-examine our goals as physicians and the nature of the physician–patient relationship. Understanding the physician’s role in that partnership, and the ethical and psychological issues impacting on how reasonable risk is determined, can improve the neurologist’s capacity to explicate such quandaries. Redefining what is required to mediate disagreement between doctors and patients about reasonable risk is at the heart of why many of us became physicians. However, such nuanced interpersonal dynamics of patient care can be neglected due to the time and resource pressures of our practices. These demands have increased the seductiveness of the efficiencies promoted by the trend toward the pseudo-objectification of evidence-based care, which has arguably monopolized the healing conversation often to the detriment of the shared narrative. We examine and attempt to reframe the fiduciary and biopsychosocial contretemps of the doctor and patient disagreeing on risk, emphasizing its humanistic, relational dimensions.

Dissociations in the meaning of risk between health-care professionals and individuals with spinal cord injury

“…17 Differences in risk perspectives between professionals and non-professionals or patients have been identified by others, 13,25,26 who have underscored the need to understand this phenomena and determine which risks are acceptable to the various stakeholders and why. [27][28][29] The data here confirm these findings and provide insights that specifically extend the understanding of risk perceptions of stakeholders for stem cell interventions in SCI.…”

Modifiable environmental factors in multiple sclerosis

“…Although most patients seem to be willing to receive high doses of vitamin D (even megadoses, without any scientific evidence for their use), not too many patients seem to be willing to stop smoking, drinking, starting with exercise and weight loss programs. In fact, there are reports clearly showing that patients are willing to run the risk of lifeendangering side effects from immunosuppressive drugs for MS in order to continue with the treatment 57,58 . Furthermore, thousands of patients with MS worldwide were found to be willing to submit themselves to a vascular surgical procedure to treat their MS for which there was no scientific basis 59 .…”

Ethical Implications of Osteogenesis Imperfecta across the Lifespan

“…The practice of bioethical reasoning encourages iterative reflection, listening to the values of the other, defining shared goals, reframing issues of caring and suffering, and processing information critically, intellectually and emotionally. 46 In the process of ethical deliberation, thoughtful and knowledgeable clinicians may reach different ethical conclusions in cases like those discussed above; there is usually more than one ethically justifiable response. The goal of bioethics in health care is to enable more productive communication that leads to shared decisionmaking and increases well-being for patients and health care professions.…”

“…[43][44][45] There are a number of models describing the clinicianphysician relationship in the literature. [46][47][48] For our purposes in this chapter, we will utilize Kon's shared decision-making continuum as a basis for discussion of Case 2. Kon describes a continuum of five possible approaches for deciding, depending on the specifics: While the "equal partner" decision-making approach is held as ideal, professionals in actual situations will use different approaches for different types of decisions.…”