The Framing Dilemma: Quantitative Information, Shared Decision Making, and Nudging

Schwartz, Peter H.

doi:10.1177/0272989x221109830

Cited by 8 publications

(4 citation statements)

References 15 publications

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“…Although participants described conversations with clinicians as having significant impact on their perception that they needed BMT to survive, there is no way to know how the decision was actually presented by clinicians. The ways that clinicians frame risk information can affect decision making, 39 and follow-up studies may benefit from including clinicians in the PD process.…”

Section: Discussionmentioning

confidence: 99%

Investigating and Supporting Patient and Caregiver Sensemaking in Complex Medical Decisions Using Participatory Design

Fadem

2023

MDM Policy & Practice

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Background. Patients and caregivers facing complex health decisions must make sense of unfamiliar, emotionally challenging information and experiences. For patients with hematological malignancy, bone marrow transplant (BMT) may be the best chance for a cure but has significant risk of morbidity and mortality. This study aimed to investigate and support patient and caregiver sensemaking as they consider BMT. Methods. Ten BMT patients and 5 caregivers engaged in remote participatory design (PD) workshops. Participants drew timelines of their memorable experiences leading up to BMT. Then, they used transparency paper to annotate their timelines and design improvements to this process. Results. Thematic analysis of drawings and transcripts revealed a 3-phase sensemaking process. In phase 1, participants were introduced to BMT and understood it as a possibility, not an inevitability. In phase 2, they focused on meeting prerequisites including remission and donor identification. Participants came to believe they needed transplant, consequently describing BMT not as a decision between viable options, but that transplant was their “only chance” for survival. In phase 3, participants attended an orientation detailing the extensive risks of transplant, leading to anxiety and doubt. Participants designed solutions that provided reassurance to those grappling with the life-altering impacts of transplant. Conclusions. For patients and caregivers navigating complex health decisions, sensemaking is a dynamic, ongoing process that affects expectations and emotional well-being. Interventions targeting reassurance alongside risk information can alleviate emotional impact and facilitate expectation development. The integration of PD and sensemaking methodologies enables participants to create holistic, tangible representations of experiences while empowering stakeholder engagement in intervention design. This method could be applied to other complex medical contexts to understand lived experiences and develop effective support interventions. Highlights Bone marrow transplant patients and caregivers experienced an evolving, emotionally challenging process of gradually understanding the transplant procedure and its risks. The solutions that participants designed centered on providing reassurance alongside risk information, suggesting future interventions could target emotional support as patients attempt to meet prerequisites and grapple with the risks of the potentially curative procedure. By viewing the challenges of complex medical decisions in terms of sensemaking and applying visual methods such as participatory design, researchers can facilitate expression of the dynamic, multifaceted, emotional components of experience and empower stakeholder involvement in intervention design.

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Section: Discussionmentioning

confidence: 99%

Investigating and Supporting Patient and Caregiver Sensemaking in Complex Medical Decisions Using Participatory Design

Fadem

2023

MDM Policy & Practice

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“…It is important to consider the potential challenges and risks of using timelines as well as their broader possible application. These timelines present granularity and complexity ( 57 , 58 ). Preparing patients or surrogates to comment on specific interventions may lead to declarations that are ill-fitting, conflict with best clinical judgment, or do not truly reflect the patient's goals ( 59 ) due to limited understanding ( 60 ).…”

Section: Discussionmentioning

confidence: 99%

A case for preference-sensitive decision timelines to aid shared decision-making in intensive care: need and possible application

Göcking,

Gloeckler,

Ferrario

et al. 2023

Front. Digit. Health

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In the intensive care unit, it can be challenging to determine which interventions align with the patients' preferences since patients are often incapacitated and other sources, such as advance directives and surrogate input, are integral. Managing treatment decisions in this context requires a process of shared decision-making and a keen awareness of the preference-sensitive instances over the course of treatment. The present paper examines the need for the development of preference-sensitive decision timelines, and, taking aneurysmal subarachnoid hemorrhage as a use case, proposes a model of one such timeline to illustrate their potential form and value. First, the paper draws on an overview of relevant literature to demonstrate the need for better guidance to (a) aid clinicians in determining when to elicit patient preference, (b) support the drafting of advance directives, and (c) prepare surrogates for their role representing the will of an incapacitated patient in clinical decision-making. This first section emphasizes that highlighting when patient (or surrogate) input is necessary can contribute valuably to shared decision-making, especially in the context of intensive care, and can support advance care planning. As an illustration, the paper offers a model preference-sensitive decision timeline—whose generation was informed by existing guidelines and a series of interviews with patients, surrogates, and neuro-intensive care clinicians—for a use case of aneurysmal subarachnoid hemorrhage. In the last section, the paper offers reflections on how such timelines could be integrated into digital tools to aid shared decision-making.

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“…An essential question is to what extent all benefits and harms, including working mechanisms and the more seldom side-effects, need to be explained in a PtDA and/or option grid, considering what is known about the difficulties in using such information among patients with lower health literacy or numeracy (51,52). The benefit of DMT options can be difficult to convey clearly, for example: "In a group of 100 patients taking a DMT, a 30% reduction of relapses will occur as compared to taking no medication.…”

Section: Deliberation In the Clinical Encountermentioning

confidence: 99%

Shared decision-making in patients with multiple sclerosis

2022

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Multiple sclerosis (MS) is a chronic and progressive neurological disorder impacting physical, cognitive, and psychosocial health. The disease course, severity, and presence of symptoms differ within and between persons over time and are unpredictable. Given the preference-sensitive nature of many key decisions to be made, and the increasing numbers of disease-modifying therapies, shared decision-making (SDM) with patients seems to be key in offering optimum care and outcomes for people suffering from MS. In this paper, we describe our perspective on how to achieve SDM in patients with MS, following key SDM-elements from established SDM-frameworks. As for deliberation in the clinical encounter, SDM communication training of professionals and feedback on their current performance are key aspects, as well as encouraging patients to participate. Concerning information for patients, it is important to provide balanced, evidence-based information about the benefits and the harms of different treatment options, including the option of surveillance only. At the same time, attention is needed for the optimal dosage of that information, given the symptoms of cognitive dysfunction and fatigue among MS-patients, and the uncertainties they have to cope with. Finally, for broader communication, a system is required that assures patient preferences are actually implemented by multidisciplinary MS-teams. As SDM is also being implemented in many countries within the context of value-based health care, we consider the systematic use of outcome information, such as patient-reported outcome measures (PROMs) and Patient Decision Aids, as an opportunity to achieve SDM.

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The Framing Dilemma: Quantitative Information, Shared Decision Making, and Nudging

Cited by 8 publications

References 15 publications

Investigating and Supporting Patient and Caregiver Sensemaking in Complex Medical Decisions Using Participatory Design

Investigating and Supporting Patient and Caregiver Sensemaking in Complex Medical Decisions Using Participatory Design

A case for preference-sensitive decision timelines to aid shared decision-making in intensive care: need and possible application

Shared decision-making in patients with multiple sclerosis

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