Discussion
A patient in the clinic; a person in the world. Why shared decision making needs to center on the person rather than the medical encounter

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Abstract

Interest in shared decision making (SDM) has increased and become widely promoted. However, from both practical and measurement perspectives, SDM’s origin as an outgrowth of patient autonomy has resulted in narrowly conceptualizing and operationalizing decision making. The narrow focus on individual patient autonomy fails in four main ways: 1) excluding several facets of the roles, actions, and influences of decision partners in decision making; 2) focusing solely on the medical encounter; 3) ignoring the informational environment to which patients have access; and 4) treating each encounter as independent of all others. In addition to creating a research agenda that could answer important outstanding questions about how decisions are made and the consequences thereof, reconceiving SDM as centered on the person rather than the medical encounter has the potential to transform how illness is experienced by patients and families and how clinicians find meaning in their work.

Introduction

Shared decision making (SDM) is promoted nationally and internationally as a part of patient and family-centered care, an ethical imperative, and as a way to tailor evidence-based guidelines to individual patient needs [1], [2], [3]. SDM requires that at least two people engage in discussion that includes information exchange and an explication of patient values and preferences in order to come to a decision that meets that patient’s needs at that point in time [4], [5], [6]. However, conceptualization and research on SDM have been narrow, giving scant attention to factors − both inside and outside the medical visit − that may influence the patient experience of decision making. Through this paper, we will explain how the narrow view of SDM became prominent and argue for the necessity of explicitly envisioning and creating opportunities to expand the narrow view to effect Person Centered Decision Making (PCDM).

While patient-centered medicine, particularly with respect to SDM, is not new [7], [8], [9], we emphasize that a change from patient-centered to person-centered, although seemingly just a matter of words, implies a much broader view on medical work. While ‘patient’ carries a notion of someone (temporarily or permanently) limited by illness or disease, increasing the risk that the provider primarily sees these limitations and acts accordingly, ‘person’ widens the scope: this someone has a life, a history, and relationships, from which s/he cannot be separated. We propose that the perspective the change of words introduces will have profound effects on our perception of self-determination and autonomy [10]. Patient-centered medicine includes the patient’s “lifeworld” [11] as an important component to care, but consideration of how decisions are made, from the patient’s point of view, is less clear. That is, the clinician is encouraged to see the patient as a full person, but SDM research has ignored what is analogous to what has been termed “the invisible work of being a patient” [12]: that is, the invisible work of contributing to and sharing in decision making.

Section snippets

A focus on individual, rather than relational, autonomy

SDM developed out of the bioethical principle of respect for autonomy, particularly as related to research participation [5]. Therefore, the emphasis has been on individual autonomy at the moment of perceived decision making or decision resolution rather than recognizing the lived context of the patient. This seems odd, as SDM promotes a tailored approach to decision making − but the emphasis on individual rights has resulted in researchers’ focus on the individual patient’s role in decisions

A narrative, person-centered model of SDM

With all of the above limitations of SDM in mind, we developed a person-centered model of healthcare decisions. In this model, decisions are seen through the experiences of the patient and family, and therefore include aspects of decision making that may not occur within the medical visit.

In our work with patients with communication disabilities [36] Morris et al. described additional phases − prior to the visit, “decision (or encounter) preparation”, and after the visit, “decision (or

Implications of a person-centered decision model

The importance of shifting our view from “medical visit decisions” to “person-centered decisions” is seen in all the behaviors and outcomes that are in patient hands: in primary care visits, an estimated 30% of prescriptions go unfilled [45], [46]; patients do not follow through on referrals [47], [48]; cancer screenings remain undone [49], [50]. In this model, adherence is but one measure of the decision process. These occurrences of intentional non-adherence represent opportunities: not to

Conclusions

It is clear that not all clinical decisions are of equal importance, and some decisions, once acted upon, are irrevocable. Yet patients and families are those who live with the consequences of decisions − individually and cumulatively. Accounting for the entirety of decision processes is necessary in order to improve the components of decision making that occur within medical visits and clinical relationships to effect the best care and outcomes for the entire individual. This model focuses on

Acknowledgements

Dr. Clayman was supported during this work by a Fulbright Scholar grant from the US-Norway Fulbright Foundation. Dr. Clayman would like to thank Tamryn Gray, RN MSN for her contribution of the term “decision partner” to the manuscript.

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