Navigating Patient-Initiated Non-Standard Care (PINSC) Requests: Applying an Ethically Coherent Framework for Shared Decision-Making.

In current medical decision-making, prioritizing patient autonomy and shared decision-making has reshaped the ethical landscape. Medical decisions are no longer solely driven by a strong physician paternalism, where doctors are assumed to know best, but are increasingly characterized by a sharing of information, collaboration on decisions, and incorporation of patient values and preferences. While this shift promotes shared decision-making and patient-centered care, it has also given rise to additional ethically-complex challenges, including what will be referred to here as Patient-Initiated Non-Standard Care (PINSC) requests. PINSC requests emerge when patients or their surrogate decision-maker(s) seek interventions which fall outside accepted medical guidelines or evidence-based standards of care. This paper recounts various PINSC requests received at several hospitals in Ontario, Canada. Fundamental distinctions between PINSC requests and other cases of informed refusal are then established to highlight their novel ethical complexity, and I argue that this complexity gives rise to significant ethical and professional concerns that warrant increased attention. I then explore the reasons why clinicians often feel obligated to accede to PINSC requests, review the limitations of existing response strategies to addressing them, and propose that a model of shared decision-making called the Professionally-Driven Zone of Patient or Surrogate Discretion, or Professionally-Driven ZPSD, can be used as an ethically-defensible framework for navigating these cases. The Professionally-Driven ZPSD supports clinicians to develop a range of treatment options ("the zone") for decision makers to choose from that are ethically permissible, as they would fall between those treatments which cause unjustifiable harm, and those (or that) which would be in the patient's best interests to have if this can be defined.