Ian Hargraves

Shared Decision Making: The Need For Patient-Clinician Conversation, Not Just Information

The growth of shared decision making has been driven largely by the understanding that patients need information and choices regarding their health care. But while these are important elements for patients who make decisions in partnership with their clinicians, our experience suggests that they are not enough to address the larger issue: the need for the patient and clinician to jointly create a course of action that is best for the individual patient and his or her family. The larger need in evidence-informed shared decision making is for a patient-clinician interaction that offers conversation, not just information, and care, not just choice.

Patient capacity and constraints in the experience of chronic disease: A qualitative systematic review and thematic synthesis

BackgroundLife and healthcare demand work from patients, more so from patients living with multimorbidity. Patients must respond by mobilizing available abilities and resources, their so-called capacity. We sought to summarize accounts of challenges that reduce patient capacity to access or use healthcare or to enact self-care while carrying out their lives.MethodsWe conducted a systematic review and synthesis of the qualitative literature published since 2000 identifying from MEDLINE, EMBASE, Psychinfo, and CINAHL and retrieving selected abstracts for full text assessment for inclusion. After assessing their methodological rigor, we coded their results using a thematic synthesis approach.ResultsThe 110 reports selected, when synthesized, showed that patient capacity is an accomplishment of interaction with (1) the process of rewriting their biographies and making meaningful lives in the face of chronic condition(s); (2) the mobilization of resources; (3) healthcare and self-care tasks, particularly, the cognitive, emotional, and experiential results of accomplishing these tasks despite competing priorities; (4) their social networks; and (5) their environment, particularly when they encountered kindness or empathy about their condition and a feasible treatment plan.ConclusionPatient capacity is a complex and dynamic construct that exceeds “resources” alone. Additional work needs to translate this emerging theory into useful practice for which we propose a clinical mnemonic (BREWS) and the ICAN Discussion Aid.

Decision aids, empowerment, and shared decision making

Each works or fails to work in patient-clinician conversations

Values as Hypotheses: Design, Inquiry, and the Service of Values

Values: A Problem of Practice The question of the relationship of design and values has sparked much scholarship during the past 30 years. These investigations have led to the growing consensus that design is not a neutral activity; rather, it is value-laden: design is laden with, or bears, values. Despite substantial agreement that design is value-laden, significant variation arises in understanding how and why design bears values.1 Some scholars argue that artifacts act to determine what is possible and impossible in human engagements with the world—that is, products bear consequences that affect what we value in human life and living.2 Others note that products, broadly conceived, bear the conscious and unconscious intentions, values, and politics of the individuals and corporations that designed them.3 Some scholars propose that designed products bear the preferences and values of those who use them,4 while others view values as ideals, and design bears the burden of approximating an ideal.5 Others speak of products as embodying values, as valuebearing material expression.6 Others emphasize the capacity of designers and publics to give voice to values, to contest and argue for what should be valued; here, values are born and borne in argument.7 None of these positions offers a definitive, settled, or uncontested account of the relation of design and values. This scholarship, however, has led to calls for practitioners to explicitly address values in their everyday design practice. Values-oriented practitioners not only are faced with a variety of theoretical understandings; they also regularly encounter the empirical fact that a given value (e.g., autonomy) can be both valuable and not valuable in its participation in design products and practices. Batya Friedman provides a useful example that illustrates this problem. She describes a situation in which a new computer workstation, designed to support speech input and multimedia, includes a built-in, always-on microphone. When a user of this workstation wishes to have a conversation that is not recorded, she must go through multiple steps to turn off the microphone—a cumbersome solution. Out of this case, Friedman explores the concept of autonomy, she asks: 1 For a thorough scholarly explication of the history of ethics and design from a European perspective see, Anna Valtonen, “Back and Forth with Ethics in Product Development—A History of Ethical Responsibility as a Design Driver in Europe” (presentation, Conference of the European Institute for Advanced Studies in Management (EIASM), CergyPontoise, France, October 13, 2006). 2 Bruno Latour, “Where are the Missing Masses? The Sociology of a Few Mundane Artifacts,” in Shaping Technology/Building Society: Studies in Sociotechnical Change, ed. Wiebe E. Bijker and John Law (Cambridge, MA: The MIT Press, 1994), 225–58. 3 Langdon Winner, “Do Artifacts Have Politics?,” in The Whale and the Reactor: A Search for the Limits in an Age of High Technology (Chicago: University of Chicago Press, 1986), 19–39. 4 Roland Barthes, Mythologies, 1st edition, Annette Lavers, trans. (New York: Hill and Wang, 1972); cf. (Paris: Editions du Seuil, 1957). 5 Victor J. Papanek, Design for the Real World: Human Ecology and Social Change, 1st ed. (New York: Pantheon Books, 1972). 6 Anthony Dunne and Fiona Raby, Design Noir: The Secret Life of Electronic Objects (Boston: August Media, 2001). 7 Carl DiSalvo, Adversarial Design (Cambridge, MA: The MIT Press, 2012).

Shared Decision-Making in Diabetes Care.

Shared decision-making (SDM) is a collaborative process by which patients and clinicians work together in a deliberative dialogue. The purpose of this dialogue is to identify reasonable management options that best fit and addresses the unique situation of the patient. SDM supports the patient-centered translation of research into practice. SDM also helps implement a core principle of evidence-based medicine: evidence is necessary but never sufficient to make a clinical decision, as consideration of patient values and context is also required. SDM conversations build on a partnership between the patient and the clinician, draw on the body of evidence with regard to the different treatment options, and consider options in light of the values, preferences, and context of the patient. SDM is appropriate for diabetes care because diabetes care often requires consideration of management options that differ in ways that matter to patients, such as the way in which they place significant demands on patient’s life and living. In the last decade, SDM has proven feasible and useful for sharing evidence with patients and for involving patients in making decisions with their clinicians. Health care and clinical policies advocate SDM, but these policies have yet to impact diabetes care. In this paper, we describe what SDM is, its known impact on diabetes care, and needed work to implement this patient-centered approach in the care of the millions of patients with diabetes.

Shared decision-making in the care of individuals with diabetes

People with diabetes often live with other chronic conditions and lead complicated lives. Determining what is the best management decision for a patient requires consideration of each individuals personal, social and biomedical context, what he or she values, the reasons he or she has to value the available options, and the relative contribution of each option in terms of benefits, harms, costs and inconveniences. Empathic conversations between patients and clinicians to diagnose the patient situation that necessitates action and the range of evidence‐based actions that best address the situation, so‐called shared decision‐making, are essential to the personalized care of people with diabetes. The aim of the present review was to present key elements of shared decision‐making and propose three different approaches for its application. The first approach focuses on transferring information to patients so that they can make decisions. The second approach, choice, focuses on cultivating the individuals ability to give voice to which choice is best for them. The third approach, conversation, establishes an empathic conversational environment through which the individual with diabetes and their clinician think and talk through how to address the problems of living with diabetes and related illnesses. These approaches are manifest in the design of evidence‐based decision aids created to support shared decision‐making. In randomized trials, decision aids can efficiently improve patients knowledge, satisfaction, risk awareness, decisional conflict and involvement. Further research, however, is needed to better understand when and how to promote the empathic conversations, patient, clinician and service and policy contexts necessary to routinely implement shared decision‐making in different at scale healthcare systems. In the interim, sufficient evidence and tools exist for persons with diabetes and their clinicians to gain expertise in making decisions together.

Caring with evidence based medicine

Using evidence for kind and careful care

Minimally disruptive medicine: the evidence and conceptual progress supporting a new era of healthcare

Patients with chronic conditions or multimorbidity, and often their caregivers, have to adjust their lives and mobilise their capacity (ability) to respond to the workload (demands) imposed by treatments and the care of their conditions. There is a continuous and complex interaction between workload and capacity. When capacity proves insufficient to address the treatment workload, creating a burden, patients may place a lower priority on other aspects of their lives, or reduce engagement with healthcare. Guidelines usually focus on disease-centred outcomes without consideration of limited capacity or demanding workload (burden) from treatment regimens. It seems reasonable to consider that healthcare needs reshaping so that care that pursues goals important to patients as well as those suggested by evidence-based medicine. This can be achieved by using shared decision approaches guided by the expertise of clinicians to deliver optimal care while minimising the burden of treatment on patients, their caregivers, and the healthcare system. What we need is minimally disruptive medicine.

Meaningful conversations in living with and treating chronic conditions: development of the ICAN discussion aid

BackgroundThe needs of the growing population of complex patients with multiple chronic conditions calls for a different approach to care. Clinical teams need to acknowledge, respect, and support the work that patients do and the capacity they mobilize to enact this work, and to adapt and self-manage. Tools that enable this approach to care are needed.MethodsUsing user-centered design principles, we set out to create a discussion aid for use by patients, clinicians, and other health professionals during clinical encounters. We observed clinical encounters, visited patient homes, and dialogued with patient support groups. We then developed and tested prototypes in routine clinical practice. Then we refined a final prototype with extensive stakeholder feedback.ResultsFrom this process resulted the ICAN Discussion Aid, a tool completed by the patient and reviewed during the consultation in which patients classified domains that contribute to capacity as sources of burden or satisfaction; clinical demands were also classified as sources of help or burden. The clinical review facilitated by ICAN generates hypotheses regarding why some treatment plans may be problematic and may not be enacted in the patient’s situation.ConclusionWe successfully created a discussion aid to elucidate and share insights about the capacity patients have to enact the treatment plan and hypotheses as to why this plan may or may not be enacted. Next steps involve the evaluation of the impact of the ICAN Discussion Aid on clinical encounters with a variety of health professionals and the impact of ICAN-informed treatment plans on patient-important outcomes.

Shared decision making and the internist.

In this narrative review, we locate within the tradition of great diagnosticians in internal medicine, a fundamental development in patient-centered care: shared decision making (SDM). In this way, we present SDM as a core component of the clinical method, one in which diagnosis of the situation and of the actions that resolve it is essential toward the practice of evidence-based medicine.