# Beyond Preferences: Rethinking shared decision-making through the Lens of care

Mauro Turrini, Roberta Valenti, Jeanette Bresson Ladegaard Knox, Aarón

Zau Nkosi Rio, Mette Svendsen, Catherine Bourgain

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Mauro Turrini, Roberta Valenti, Jeanette Bresson Ladegaard Knox, Aarón Zau Nkosi Rio, Mette Svendsen, et al.. Beyond Preferences: Rethinking shared decision-making through the Lens of care. Social Science & Medicine, 2026, 390, pp.118801. 10.1016/j.socscimed.2025.118801. hal-05469454

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# Beyond Preferences: Rethinking shared decision-making through the Lens of care

Mauro Turrini<sup>a, *, †</sup>, Roberta Valenti<sup>b, ** †</sup>, Jeanette Bresson Ladegaard Knox<sup>c</sup>, Aarón Zau NKosi Rio<sup>a †</sup>, Mette N. Svendsen<sup>c</sup>, Catherine Bourgain<sup>b †</sup>

## ABSTRACT

Efforts to involve patients in medical decision-making have led to the development of various models for structuring clinical encounters. Among them, Shared Decision-Making (SDM) is now a cornerstone of contemporary healthcare, based on the ethical imperative to involve patients through the articulation of preferences. However, in practice, SDM often relies on a rationalist model of deliberation that prioritizes autonomy, clarity, and informed choice—often overlooking the relational, affective, and embodied dynamics of care.

Drawing on ethnographic fieldwork in France, Spain, and Denmark with patients undergoing long-term anticoagulant therapy following unprovoked venous thromboembolism (VTE), this article examines the contexts in which decisions are made, as well as patients' attitudes toward those decisions and their treatment. We argue that “preferences”—the conceptual hinge of SDM—are not stable expressions of autonomous will, but rather fragile, contingent, and emergent responses. Especially as understood and operationalized by practitioners, preferences often obscure other forms through which patient agency is exercised, both within and beyond the clinical consultation.

Engaging Annemarie Mol’s “logic of care”, we show how patient agency unfolds not as a rational choice between predefined options, but as an ongoing, situated negotiation of treatment that extends beyond the consultation. Furthermore, focusing on care, rather than choice, allows for a medical approach attentive to the patient’s needs, demands, and hesitations—not solely to their stable preferences regarding treatment duration. These findings call for broadening participation beyond preference articulation, toward more responsive and context-sensitive forms of engagement.

## 1. Introduction

Among the many attempts to enhance patient involvement in clinical decision-making, none has been more influential than Shared Decision-Making (SDM), a collaborative process in which clinicians and patients jointly make treatment decisions. SDM emerged as an ethical corrective to both medical paternalism and the non-directive model of care, which respectively positioned either the clinician or the patient as the sole decision-maker (Charles et al., 1999). The rise of SDM reflects a broader historical trend toward more horizontal, partnership-oriented relationships in medicine. Timmermans (2020) aptly captured the figure of the “engaged patient,” a subject increasingly expected to voice preferences,

participate in decisions, and assume responsibility for managing health.

This article<fnref n="1" /> critically revisits SDM through the notion of *preference*, conceptualized alongside *information* as the central mechanism of patient participation. In their seminal model, *Charles and colleagues* (1997) stressed that both physicians and patients should contribute to the two main inputs—*information* and *preferences*—rather than restricting expertise to doctors and values to patients. Yet, subsequent SDM formalizations draw on this distinction between *information* and *preference* to amplify an enduring asymmetry between objective knowledge and subjective acts of will. For example, Elwyn and colleagues' influential model frames deliberation as a process of transforming patients' “initial preferences” into “informed preferences”

<footnote><sup>a</sup> Instituto de Políticas y Bienes Públicos (IPP), Consejo Superior de Investigaciones Científicas (CSIC), Spain</footnote>

<footnote><sup>b</sup> CERMES3, Institut National de La Santé et de La Recherche Médicale (Inserm), Université de Paris Cité, CNRS, France</footnote>

<footnote><sup>c</sup> Department of Public Health, Centre for Medical Science and Technology Studies, University of Copenhagen, Denmark</footnote>

<footnote>* Corresponding author. Centro de Ciencias Humanas y Sociales (CCHS), c/o Calle Albasanz 26, 28037 Madrid, Spain.</footnote>

<footnote>** Corresponding author. Cermes3, Campus CNRS, 7, rue Guy Moquet, 94800, Villejuif, France.</footnote>

<footnote>E-mail addresses: mauro.turrini@csic.es (M. Turrini), roberta.valenti@cnrs.fr (R. Valenti).</footnote>

<footnote n="1">¹ This article is presented on behalf of the MORPHEUS consortium (Prognosis iMprOvement of unpRovoked venous tHromboEmbolism Using perSonalized anticoagulant therapy), a multidisciplinary research project funded by the European Commission under the Horizon Europe programme (grant HORIZON-HLTH-2022-TOOL-11-01-2022). The consortium is coordinated by Francis Couturaud, MD, PhD, and Catherine Lemarie, PhD (University Hospital of Brest, INSERM, France) and brings together clinical researchers, social scientists, and data specialists from multiple European institutions (INSERM, Universities, Hospital centers, TodayTomorrow company). For further details on its structure, members, and research activities, please refer to the annex provided as supplementary material (S1).</footnote>
through structured discussion of risks and benefits (Elwyn et al., 2012). This logic entrenches the idea that medical information is the gateway to legitimate preference formation. In doing so, the coupling of information and preferences reproduces the opposition between abstract medical evidence and situated patients' values, ultimately prioritizing the former over the latter (Wieringa et al., 2017). As Spatz et al. (2017, p. 1309) put it, "clinicians are the experts in the evidence, and patients are the experts in what matters most to them."

Systematic reviews confirm the amplification of this asymmetry in practice. Bomhof-Roordink et al. (2019) found that SDM models consistently emphasize option description, decision-making, preference elicitation, and tailored information, while neglecting components more directly tied to the texture of clinical encounters, such as agenda-setting frames, patient questions, or time for reflection. By reviewing the studies evaluating SDM in practice, Rake et al. (2022) showed that SDM is often reduced to informational activities—option presentation and recommendation—while patients’ voices are only narrowly integrated. To move beyond this, they propose to extend the notion of preference with the more inclusive “personal perspective elicitation (PPE),” encompassing not only values and preferences but also the patient’s broader social and contextual circumstances.

PPE also highlights a second limitation of patients' participation: the marginalization of the messy, idiosyncratic forms of input that patients bring to consultations. This connects to a critique in medical sociology about restricting expression of preferences to the consultation setting and to verbalized willingness. In particular, Rapley (2008) conceptualizes decision-making as “distributed,” unfolding across time, space, and multiple actors—including family members, clinicians, and digital resources. With the notion of “relational autonomy” attention is directed to these processes, situating agency within social and temporal interdependencies, rather than locating it in a self-contained, rational individual. Extending this critique, Hawking and Swinglehurst (2024) show how decision-making also involves non-deliberative and embodied elements: patients’ sensations, symptoms, and even fluids enact a “body-in-need-of-help” that exceeds cognitive control.

Other scholars outline the structural assumptions underpinning SDM. Thomas et al. (2021) argue that SDM rests on “normative models of decision-making” that presume rational actors evaluating risks and outcomes. Such models obscure the structural, emotional, and existential conditions under which decisions actually unfold, while aligning with a broader neoliberal logic in which choice becomes a moral imperative and responsibility is individualized (Clarke et al., 2010). Although such framing of SDM may be too simplistic, it brings to the fore the moral implications of patients’ adherence to long-term treatment, what was once called “compliance.” As Murdoch et al. (2015) and Hawking et al. (2020) demonstrate, patients engage in discursive and affective labor to present themselves as responsible, informed, and compliant. Adherence thus becomes a marker of virtue and legitimacy, embedded in a regime that equates biomedical conformity with good citizenship. Finally, despite emphasizing the tailoring of decisions to patients’ circumstances, in practice many SDM frameworks rely on a rationalist image of the patient as a deliberative choosers, sidelining embodied, moral or relational forms of engagement.

To better understand these dynamics, we draw on the notion of “care” as developed by Mol (2008) and colleagues (Mol et al., 2010), to reframe medical decision-making as a relational process grounded in vulnerability and interdependence. Agency here involves ongoing support and responsiveness, not just choice. Patients exercise agency through “tinkering”: adaptive strategies for managing illness. This shift directly challenges the rationalist individualism embedded in SDM by reframing decision-making through a logic of care. Patients do not simply “choose” between options. They tinker with life, managing illness in ways that are responsive, situated, and often improvised. Clinicians, in turn, do not merely convey neutral facts, but offer value-laden knowledge shaped by the complexities of illness (Mol, 2008, chapt. 4). Information and preference—facts and values—are not

separate spheres, but intertwined within situated practices. In this context, care becomes a joint effort to navigate both what matters and what is possible.

This article seeks to broaden the meaning of preference beyond informed choice through the empirical analysis of a concrete clinical decision-making context: whether to continue or discontinue anticoagulant therapy in patients diagnosed with unprovoked<fnref n="2" /> venous thromboembolism (VTE). VTE, encompassing pulmonary embolism (PE) and deep vein thrombosis (DVT), is a common and heterogeneous condition that may require hospitalization and can lead to physical impairment or even death. Following 3–6 months of anticoagulant therapy, clinicians assess the need for continued treatment to prevent new VTE episodes, framing the decision as a probabilistic trade-off between the risk of recurrent thromboembolism and the risk of bleeding associated with the anticoagulant therapy. Despite extensive research, uncertainty and controversy persist regarding the relative importance of risk factors associated with both relapse and bleeding (Turrini and Bourgain, 2022). This indeterminacy opens room for patient preferences to influence treatment decisions, even within evidence-based frameworks (Couturaud et al., 2024).

Our ethnographic fieldwork—conducted in university hospitals and regional clinics across France, Spain, and Denmark—explores both patients’ relationship with healthcare professionals and their treatment experiences. In the settings studied, professionals do not strictly apply formal SDM protocols, but have incorporated its principles to varying degrees. In one department, the head physician regularly solicited patients’ opinions and encouraged colleagues to do likewise. Elsewhere, clinicians were more directive but still explained the rationale behind their decisions to patients, as detailed in footnote 1.

Following Rapley (2008), we examined “decision-in-action” in these clinical situations, by both observing medical consultations and interviewing patients about their experiences of them. Our findings highlight patients’ reluctance in eliciting and articulating preferences, as well as the presence of needs and expectations—often embodied, implicit, or silenced—that are rarely captured during consultations.

As prior research has indicated, patients’ experiences of illness and treatment are shaped not only by medical risk, but also by gendered bodies, social expectations, and affective or idiosyncratic responses. VTE accidents might have a significant psychological and existential impact (Hojen et al., 2017; de Winter et al., 2024; Parrott et al., 2015), while side effects often deemed medically minor may also lead to profound social and personal consequences that frequently go unrecognized by clinicians (Azenkot and Schwarz, 2022; Hassan et al., 2025). Across our sites, responses to medical advice are informed as much by trauma, uncertainty and the burdens of chronic therapy as by clinical information itself. Preferences, when expressed, rarely reflect the stable values or fully informed deliberation. More often, they are shaped by ambivalence, tacit judgments, and the desire to sustain workable relationships with healthcare professionals.

The remainder of the article is structured as follows. After outlining our methodology, we present three empirical sections: first, we approach patients’ reluctance to participate in treatment decisions as a form of epistemic and moral positioning. Second, we explore how temporal and affective dissonances emerge during consultations, particularly around probabilistic reasoning, and how the embodied and gendered burdens of long-term anticoagulant therapy are scarcely recognized within the clinical encounter. Finally, we describe how patients negotiate, adapt, and sometimes contest medical advice, illuminating dynamic and situated forms of agency beyond the formal moment of decision-making.

<footnote n="2">² A MVTE is unprovoked if it occurs in the absence of a major transient risk factor and a major persistent risk factor.</footnote>
## 2. Materials and methods

The data on which this paper relies were collected as part of the European project MORPHEUS, Prognosis iMprOvement of unpRovoked venous tHromboEmbolism Using perSonalized anticoagulant therapy. The main objective of the MORPHEUS project is to develop and evaluate a decision-support tool to decide on long-term anticoagulant treatment. The tool should integrate state-of-the-art knowledge on clinical, bio-logical and hereditary factors related to recurrence and bleeding risks, while also fostering patient involvement in a SDM process.

While conducted across three countries (France, Spain, and Denmark), our study does not aim at a formal cross-site comparison. Instead, it uses its diversity to explore how patient experiences of VTE are shaped by varying healthcare configurations and follow-up practices. Fieldwork took place in five departments (including pneumology, vascular medicine, internal medicine and cardiology) of four university hospitals, including two national reference centers, and one regional clinic.

Ethical approvals were obtained in each country, from the institutional review boards of the participating Spanish hospitals, the Inserm Ethics Evaluation Committee in France (IRB00003888) and the Scientific Ethics Committees for the Capital Region of Denmark, which issued a formal exemption due to the study's qualitative nature.

Fieldwork, including semi-structured interviews and observation, was conducted by five co-authors. Once informed consent was obtained, we observed consultations, focusing on whether treatment options were discussed, patients' views were considered, and a decision was reached. During these observations, we selected some patients for follow-up interviews. Eligible patients were adults diagnosed with PE and/or DVT, who had taken part in at least one decision regarding continuation or discontinuation of anticoagulant treatment. Interviews were conducted at different stages: during the one-day hospitalization preceding the six-month consultation, after the preventive treatment decision, or during long-term follow-up. This allowed us to capture perspectives across time and treatment paths. The sample was diverse in clinical and demographic characteristics.

**France:** 18 patients (15 PE, 3 DVT); 7 women (5 aged 61+, 2 aged 20-40); 11 men (2 aged 20-40, 5 aged 41-60, 4 aged 61+).

**Spain:** 24 patients (13 PE, 8 DVT, 3 both); 10 women (5 aged 61+, 4 aged 41-60, 1 aged 20-40); 14 men (9 aged 61+, 4 aged 41-60, 1 aged 20-40).

**Denmark:** 13 patients (6 PE, 7 DVT, 3 both); 6 women (5 aged 61+, 1 aged 21-40); 7 men (5 aged 61+, 2 aged 40-60).

Where possible, interviews were conducted immediately after the consultation to capture patients' impressions and interpretations. Interviews (15-90 min) were conducted in the local language by one or two researchers, sometimes in the presence of a relative. Interviews were audio-recorded with the consent of the patients and complemented by field notes.

The collaboratively designed interview guide traced patients' trajectories in three parts: (i) the initial event, (ii) diagnosis and treatment, and (iii) long-term management and prognosis. The findings aim to analyze how patients approach medical decision-making across different settings and situations, ranging from their initial statements during the medical encounter to their everyday life experience with chronic anticoagulants therapy. To capture deliberation and preference construction, prompts included questions such as: "To what extent were you involved in deciding your long-term preventive treatment?" or "Once the decision was made, do you consistently follow the medical advice of indefinite treatment?". For further information about the method and the interview guide, please refer to Supplementary document S2.

Data analysis combining thematic coding with close reading was conducted by the six-author team. In each national sample, the process involved (1) transcription and anonymization of interviews; (2) open exploratory coding of a subset of transcripts to build a codebook; (3) iterative refinement and double-coding to ensure consistency; (4) development of categories; and (5) synthesis of themes through triangulation of interviews and fieldnotes. Weekly team meetings supported cross-national iterative interpretation and refinement of emerging themes. Analysis continued until data saturation was reached.

## 3. Findings

### 3.1. "I understand bricks, I don't understand medicine". Reluctance among patients to participate in treatment decisions

Several months after the initial VTE event, patients attended a follow-up consultation intended to determine the appropriate duration of anticoagulant (AC) treatment. Clinicians typically clarified this purpose. For instance, one clinician near the end of the encounter stated to patients: "This appointment is to decide whether you will continue or stop the anticoagulant treatment." While the degree of transparency varied, most doctors explained the decision logic in terms of balancing risks. The recurrence risk associated with unprovoked VTE was weighed against the bleeding risk associated with the treatment, with all risks shaped by age, comorbidities, and other factors.

Despite the varied clinical approaches that we observed, patients across all settings often hesitated—or outright resisted—taking part in the decision. As Charles et al. (1997) observed, this dynamic may reflect a passive role, deeply embedded in a legacy of medical paternalism internalized by both doctors and patients. Yet in our study, reluctance to decide was not only about deference. It often stemmed from a felt sense of what we analyzed as epistemic inadequacy, referring to the experience of not feeling sufficiently competent or at home in a particular knowledge practice. A 72-year-old man, who used to be a construction worker and had suffered from both DVT and PE, said:

"I understand bricks, I don't understand medicine. Many say: 'Whatever you want ...'. No, no, not whatever you want; whatever you tell me. I understand bricks, not medicine. You tell me what's best, and I'll do what you tell me."

This participant, like many others, emphasized the physician's expertise as the main reason for not interfering in the decision-making. The perception of lacking appropriate knowledge led not only to a setback, but to a broader disqualification of one's ability to decide. Another patient put it even more plainly:

"No, I wasn't involved. I don't need to be involved because I don't have the expertise. Otherwise, I'd have to start searching online and so on. I think you have to trust that they know best—that's what they're trained for." (woman, 71 years old retired, DVT and PE)

In most settings, physicians did not explicitly ask patients about their treatment preferences. However, in one of the four hospitals, the more experienced doctors made a point of doing so, asking questions like "How do you feel about continuing?" or "Does stopping worry you?" Yet even in this context, where space was made for preference expression, the asymmetry of the clinical interaction largely persisted. The invitation to participate did not necessarily empower patients in practice. Most still felt unqualified or reluctant to engage in the decision-making process.

"The problem is when doctors tell you: 'It's up to you.' That doesn't help. I'm not a doctor, I didn't study for this. If the doctor says they
can't answer or won't choose, [the consultation] becomes pointless.”
(woman, 20 years old, construction forewoman, DVT)

In Spain, institutional constraints made this dynamic particularly visible. Specialists widely considered DOAC (Direct Oral Anticoagulants) the best clinical option due to reduced bleeding risk and stable effects unaffected by diet or alcohol. However, in this country, public health insurance only covered the older generation of anticoagulants, vitamin K antagonists (VKA), which are less expensive than DOAC.<fnref n="3" /> As a result, doctors often only presented the patient with a constrained choice: an almost free AVK or a DOAC that may cost about €80 per month. When Spanish patients were asked about their involvement in treatment decisions, they frequently interpreted it as an economic question rather than a clinical one. This suggested that financial considerations were the only domain where patients felt entitled to decide. They often expressed surprise when we clarified that we were referring not just to the type of anticoagulant, but to the treatment duration. The limited involvement thus stemmed not only from epistemic asymmetry, but also from entanglement between structural constraints and narrow framings of what “decision” means.

Also, the tendency to step back and trust blindly clinicians was often framed as a way to offload responsibility:

> "There's such a risk to my health, and I know so little, that I'd rather not ... I might be disappointed if they say it has to continue, but I'm never going to question it." (man, 36 years old, web designer, DVT)

Here, deferring choice was a way to maintain compliance while avoiding the psychological and ethical burden of choice. At the same time, the delegation of responsibility could also be morally charged.

> I'm at peace [with the decision for a long-term treatment]. I just do what I'm told, you see. ... If she [the doctor] gives me a new treatment, I'll follow the new treatment ... In that sense, I think I'm a good patient. I never have mood swings, or ... You see, toward the staff, I'm very respectful — which is normal. People who save your life deserve respect, you know ... " (man, 83, technical sales engineer, DVT)

As Hawking et al. (2020) observe, therapeutic adherence is not only a strategy for preventing harm, but also a way of performing a morally acceptable patient identity. Through narratives of regularity, obedience, and rational trust in medical authority, patients construct themselves as what the authors call “adherent selves” who embody responsibility, discipline, and epistemic deference.

Likewise, the following patient compared the treatment to “a life insurance.”

*Interviewer:* The life insurance, is it because you're scared of a [thrombosis or relapse]?

*Interviewee:* No, no, the life insurance is because a professional told me so. Yes, it's my life insurance. You heard what they said, right? [the interview was conducted following a co-author's attendance at the medical consultation] That if I don't take it, there's a chance of: "Ciao bambino." [sic!] So ... I'd rather stay on Earth for now. (man, 65, retired, PE)

The metaphor of “life insurance” evokes not only the economic management of uncertainty, but also a moral economy grounded in care, responsibility and future provision for one’s family. In this context, decision-making appears less as a deliberative act and more as a moral obligation: an expectation of consistent compliance.

Yet, even when patients do not want to decide on the treatment duration, their interactions with physicians cannot be reduced to passive submission. Some patients sought understanding without wanting to influence the decision directly. Their engagement was driven less by a desire for choice than by the need to make sense of their condition and its implications.

> "I'm not a doctor. I don't have the parameters. What interests me is to understand: what's going on, why was the decision made, what's happening in my body. But I'm not the one who should decide." (man, 52, six months after his PE accident)

The following patient, for example, deferred to clinical judgment but still expressed a preference and negotiated it within the parameters imposed by medical doctors:

> "[Since I was feeling better] I asked: can we stop [the treatment] now? The doctor said: 'Not yet, we'll lower the dose but continue'. So, I said: 'Okay.' I trust their competence." (woman, 86, retired librarian, six months after her PE accident)

The patient restrained the expression of her dissent to avoid jeop-
ardizing the trust established with the practitioner. This dynamic could
have been reinforced by the setting. Two of the hospitals involved were
national reference centers, increasing perceptions of medical authority
and institutional trust. There, patients rarely reported consulting the
internet or seeking second opinions.

Even when patients challenged the medical recommendation, their opposition did not take the form of formulating an alternative, value-based preference. Rather than assuming the role of a speaker expressing a subjective opinion, they framed their disagreement within the realm of “objectivity” of medical knowledge. For instance, a 60-year-old engineer diagnosed with PE believed in a failure to properly record or acknowledge key clinical information. He situated the origin of his clot within a broader narrative of COVID-19 infection. He recounted having symptoms compatible with COVID prior to his VTE episode and claimed that several emergency physicians informally agreed with this assessment. However, no official test result or written documentation confirmed the infection at the time. Because of this lack of medical evidence, his PE was classified as an "unprovoked" event—an etiological label that triggered the recommendation of indefinite anticoagulant therapy. He strongly contested this designation, considering that the event was simply misclassified due to bureaucratic oversight and the temporal chaos of the early pandemic. He did not reject the biomedical logic per se. Rather, he insisted that it had been misapplied in his case.

> "I said: 'Doctor, with all the love in the world, I disagree with your opinion'. Because she said to me: 'No, what you had was the flu'. And no. I forgot to say at the time that it wasn't the flu because I have the evidence ... The evidence that it was COVID."

These examples show that patients may express disagreement with medical decisions through medical language and reasoning, reframing the clinical premises underpinning it. In doing so, they enact a version of the “engaged patient” (Timmermans 2020)—not as a radical challenger to medical authority, but as someone who actively participates in the epistemic logic of biomedicine. Medical decision-making may become a performance of culturally sanctioned responsible patienthood, rather than autonomous choice.

3.2. "Maybe that protocol needs to be adapted to the patient". Scripted encounters between risk assessment and under-addressed side effects

While patients' reluctance to participate often stemmed from

<footnote n="3">³ DOACs (Direct Oral Anticoagulants)—including dabigatran, rivaroxaban, apixaban, edoxaban, and betrixaban—also known as NOACs ("new" or "non-vitamin K antagonist oral anticoagulants"), offer several clinical advantages over traditional vitamin K antagonists (VKAs), such as warfarin or acenocoumarol. Specifically, DOACs have a rapid onset of action, shorter half-lives, and more predictable pharmacological effects across different patient profiles. Unlike VKAs, DOACs do not require regular INR monitoring or frequent dose adjustments, and they are not affected by dietary vitamin K intake, alcohol consumption, or hydration levels. This pharmacological stability simplifies their use and reduces the overall treatment burden. However, DOACs remain significantly more expensive than VKAs, which affects their accessibility in publicly funded healthcare systems.</footnote>
perceived epistemic inadequacy and deference to clinical authority, this dynamic was reinforced by the very structure of clinical encounters. The follow-up consultation, in particular, was shaped by a procedural logic that left little room for open-ended discussion or narrative elaboration. Patients were positioned not only as less knowledgeable, but also as data providers within a risk-classification protocol. This section explores how clinical scripts and institutional routines prioritize information deemed medically relevant for risk estimation of recurrence over patient's own questions and needs about their current situation. Consultations are organized as tightly scripted encounters, directing participation into pre-defined clinical pathways.

Medical encounters we observed usually lasted 10–20 min and were highly standardized. The consultation focused on assessing the risk of recurrence and bleeding through tightly structured questioning about lifestyle, clinical risk indicators, and treatment side effects, covering, for instance, physical activity, body weight, and signs of bleeding in the urine or stool. Although the anamnesis addressed certain aspects of the patient’s everyday routines, it usually left no space for values or the broader context of their life. These questions allowed little room for addressing concerns that did not fit with the predefined script. Physicians expected concise answers, often comparing them to data already in the medical record. Patients who took longer to respond could be interrupted, and family members who assisted too much could be explicitly shut down—one doctor remarked: “I need your husband to answer the questions.” In this mode of interaction, patient experience was parsed into binary data points, and the embodied complexity of illness was eclipsed by procedural efficiency.

It was often at the end of the consultation that patients attempted to reassert their voices, proposing theories about the origin of their clot, reporting persistent symptoms, or requesting additional tests. Doctors responded by offering reassurance, ordering further investigations (such as echocardiograms), or providing brief explanations. Efforts to involve patients in decision-making also appeared at this stage. As explained in the introduction, some physicians asked for patient preferences, whereas more directive ones only explained the rationale behind the medical decision.

The clinical priorities of this consultation were, first, to assess the individual risk of VTE recurrence, and second, to determine whether the patient was experiencing any major anticoagulant side effects. Decisions on long-term treatment were grounded in epidemiological evidence. Within this framework, the lived complexity of the patient was marginalized, acknowledged only insofar as it yielded medically relevant information. In this context, the risk logics embedded in scripted clinical questions shaped patients not as agents navigating illness, but as subjects oriented towards evidence-based prevention.

The consultation channeled both doctor and patient into a shared enactment of a risk-based logic, where probabilistic reasoning became the dominant grammar of care. A moment from a consultation clearly demonstrated this dynamic:

> The sister intervened: "Has the clot dissolved?"

> Doctor: "I don't know, and I don't care."

> Everyone laughed [sociologist/s included].

> Doctor: "The treatment continues regardless of whether the clot has dissolved." The patient seemed to have doubts: "Did I have one clot that dissolved and went to both lungs, or were there two clots?"

> The doctor replied: "Again, we don't care. There are times in medicine when too much information is neither good for doctors nor for patients." (Consultation note)

This exchange was telling. The dismissal of the patient's question and the physician's epistemic boundary-setting exemplified how probabilistic reasoning displaced attention from the patient's current health condition. What mattered was no longer what was happening then, but what might happen again—and how to mitigate that risk. The patient's

narrative concern was thus subordinated to a classificatory framework grounded in future-oriented abstraction. Such moments illustrate how the consultation is organized around a fixed temporal orientation that may differ substantially from the patient's one. While physicians focus on recurrence and statistical probabilities, patients are often preoccupied with understanding the cause, meaning, and consequences of the initial event.

Through tightly scripted questioning and the translation of lived experience into measurable variables, the consultation enacts a clinical reality in which statistical probability become both the epistemic foundation for decision-making and the normative framework through which subjectivity should be reshaped. Patients are encouraged—or at times compelled—to adopt a new clinical temporality, one oriented toward managing uncertain futures and situated within a moral horizon of prevention and control. Even the more active efforts to engage patients in decision-making are constrained by the scripted nature of the consultation and by the temporal reframing of VTE—not as a past accident, but as an ongoing risk to be managed.

The rigid structure of the consultation left little room for expressing personal needs, experiences, or narrative elements that fell outside what was considered medically relevant. Within this framework, even questions about side effects were addressed in ways that may obscure patients' own perspectives.

During consultations, physicians typically focused their questioning narrowly on bleeding-related issues. In our sample, several patients identified a broad range of symptoms—albeit sometimes uncertain—as potential side effects of the treatment, including abdominal pain, hip pain, migraines, hair loss, or fatigue.

Among these, menstrual bleeding stood out as particularly impactful. One young woman described her heavy periods and resulting anemia as "daily handicaps." Although she reported these symptoms during consultations, they were often downplayed by her physicians:

> "This anticoagulant treatment has caused health issues I never had before. I have heavy periods, which causes severe anemia. And because of the anemia, I lose a lot of hair, I'm always tired, I'm always cold. These are daily nuisances, but after four years they've become increasingly disabling. (...) I lose so much blood—it's not just blood, it's clots—and they come out very quickly. Sometimes I don't even have time to go to the bathroom or get out of bed before it's too late. I've already stained all my underwear and pants, and this happened at work—so in front of high school students, you can imagine how awkward that is. (...) I've always been treated by male doctors. When I talk to them about my period, they treat it as anecdotal. They don't pay any attention to it. No doctor has ever taken my periods seriously. But for me, it's now something urgent every month. I have to ask: Will I be able to work properly? Will I be too tired to even get out of bed? It's complicated." (woman, 34, teacher, DVT)

This account highlights an under-recognized burden of anticoagulant therapy for women of reproductive age. Despite clinical evidence linking anticoagulants to increased menstrual bleeding (Samuelson Bannow et al., 2021), this risk remains under-communicated (Azenkot and Schwarz, 2022; Hassan et al., 2025).

In an interview, a patient who continued to experience symptoms after her episode and suffered heavily from side effects, emphasized the need for more individualized attention:

> "To feel listened to and to really be able to explain what symptoms I'm experiencing physically, and to have that taken seriously and not dismissed—as I felt it was, a bit, every time ... That could help doctors think more about the choice. It would be like making something tailor-made, rather than just following a protocol because it's the protocol. Maybe that protocol needs to be adapted to the patient, especially in cases like mine, where I've been living with this daily for four years." (woman, 34, teacher, DVT)
Such reflections suggest that while patients are not necessarily opposed to medical recommendations, they often seek a more dialogic, temporally attuned form of care—one that acknowledges not just risk but lived experience.

These experiences suggest that when side effects are narrowly defined, patients' voices risk being excluded, and the complexity of treatment experiences may be lost. There are, however, exceptions. Some clinicians do respond to patients' experiential accounts and adjust treatment accordingly. For instance, the first woman who reported severe menstrual bleeding eventually had her symptoms acknowledged when she consulted the reference center. In a similar case, a doctor at another hospital agreed to suspend anticoagulation for a woman experiencing substantial hair loss. Such instances remain rare, but they show that symptoms can be reinterpreted, provided that space is made for patients to speak and be heard.

Although the clinicians in our study generally acknowledged the importance of patient communication, consultations tended to focus narrowly on clinical parameters. Broader concerns—particularly emotional, social, and existential ones—were often left unaddressed. Yet a thrombotic event such as a VTE can have a significant psychological impact. As Tran et al. (2021) have shown, PE can provoke strong anxiety and persistent stress responses. Even among those diagnosed with DVT, some patients expressed anxiety, fear of recurrence, and existential concerns. These narratives reflect a broader emotional and symbolic disruption, where illness reconfigures self-perception and heightens awareness of bodily vulnerability and mortality.

In this regard, fatigue was a particularly salient symptom. Often minimized by doctors as a lingering effect of the thromboembolic event itself, fatigue was nevertheless perceived by many patients as a direct consequence of the anticoagulant therapy. While it did not always lead to treatment discontinuation, in some cases it influenced patient preferences:

> "I especially wanted to stop the anticoagulant because I thought it was making me tired. In the end, I was wrong. I was tired because of work, general pressure, stress—not the treatment. Actually, I'm doing very well with the treatment; I don't feel any side effects." (man, 36 years old, web designer, three months after his DVT accident)

Other patients were not necessarily convinced by clinical explanations—or didn't even bring the issue up with their doctors. A 72-year-old retired male football player who had suffered from PE stated:

> "I've never taken many pills, and now I take two or three of these every morning, and I've lost strength in my legs. (...) The other day I fell. I must have stepped on a tree root or something. I split my lip. Damn it. But that's because my legs are weak. (...) I used to be an elite athlete—I had a lot of strength. Now I feel weak. Maybe it's what everyone feels, but for me, it's weakness."

This patient was not young, but he remained youthful, physically fit, financially secure, and active—he went to work every morning, usually by taxi. In this sense, he was particularly sensitive to the onset of fatigue. Typically, this kind of side effect was more frequently reported by younger patients, such as this woman, a call center worker who had experienced a PE:

> "For being 33 years old, I take two steps and I get tired. Or I take the dog out and I'm exhausted. I assume it's still early days, but ... to feel physically unwell? No. (...) It's a kind of fatigue that's inexplicable because you're really not doing anything. I mean, if I get up from here and go outside, I already feel tired. It's absurd to get exhausted from such a short movement at my age." (woman, 33 years old, IT technician, PE)

This patient felt recovered, yet she noticed subtle changes in her energy and physical endurance that deeply affected her daily life. As a single mother with no support network—she had migrated from South America a few years earlier—and working in precarious conditions,

even minor symptoms had a disproportionate impact.

The preceding excerpt also raised another point related to chronic treatment and ageing perception. Long-term treatment carried a significant psychological burden, and age remained a relevant factor. While older patients tended to view anticoagulants as just one among many daily medications—often describing them as “normal” or “routine”—younger individuals often experienced this as their first encounter with continuous pharmacological treatment. This shift could profoundly alter their sense of self:

> "It's the first medication I take every day. I'd never taken anything before ... It's daily, it's for life. It makes me feel like a sick person, even if they tell me I'm not." (woman, 59 years old, civil servant, PE)

This quotation highlights how the impact of long-term anticoagulant treatment is not only a matter of clinical effect but also of social circumstance. In particular, the level of daily activity, and the disruptions that treatment may cause, plays a crucial role. More generally, despite uncertainty about the validity of these symptom-treatment associations, only some patients reported discussing them with their doctors. A few consulted a professional who confirmed or refuted the connection, while others did not raise the issue at all.

These reflections point to the limits of a clinician-patient exchange that adheres strictly to biomedical definitions of side effects and does not leave room for the experiential associations patients make between treatment and perceived burdens. They also reveal the limitations of a symptom inquiry that fails to consider how long-term treatment impacts everyday life—risking underestimation by professionals and silence from patients.

### 3.3. "Can We stop now?". Situated forms of agency in long-term anticoagulant treatment

While Charles et al. (1997) attributed patient passivity to an internalized paternalism, our ethnographic analysis revealed a more nuanced landscape. Even when patients did not want to decide on the treatment duration, they exerted control over treatment aspects grounded in their everyday experience. In the following case, the patient accepted the long-term treatment, but he voiced doubts about an ancillary treatment like the use of compression stockings:

> "I wasn't part of any decision about medication. I take it into account when a doctor prescribes it to me. I don't think that I'm the right person to do so. Where there is a decision to be made is about these compression stockings—they can actually be incredibly irritating." (man, 52 years old, school principal, DVT)

This statement underscores a critical distinction in patient agency. The medical knowledge required to determine the most appropriate anticoagulant treatment lies outside the patient's control, making it a decision they feel unqualified to influence. In contrast, compression stockings fall within the realm of personal experience and immediate physical discomfort, allowing the patient to exercise agency over a treatment aspect they can directly assess. This patient's perspective highlights the different ways in which patients engage with their care. While they may defer complex medical decisions to physicians due to perceived expertise gaps, they assert control over elements that intersect with their daily experience. This suggests that patient autonomy is not absent in the management of medical treatment, but rather concentrated in areas where individuals feel empowered to evaluate and respond to their own needs.

At the same time, agency extends beyond explicit deliberation or intention—particularly when considering how patients tinker with the daily management of anticoagulant therapy. While they often delegated decisions about treatment duration to healthcare professionals, this did not imply full adherence to medical advice in everyday life. Patients reinterpreted, adapted, or selectively suspended recommendations—such as regular intake or the avoidance of risky
activities—depending on the context.

This dynamic was particularly evident in how patients treated the bleeding/recurrence balance associated with the treatment as situational—something to be evaluated and considered pointwise depending on specific activities and the perceived lifestyle sacrifices associated with the treatment. Patients often managed treatment suspension in circumstances explicitly acknowledged by medical guidelines, with dental procedures being the most common. However, some went beyond these sanctioned scenarios, opting for temporary suspension or selective adherence based on their own priorities, daily routines, or embodied judgments. Motivations varied: avoiding drug interactions, minimizing side effects, or preserving valued activities. In some cases, these adjustments became routine. One young woman, for example, reported regularly skipping her medication on weekends to avoid mixing it with alcohol:

> They're medicines you shouldn't take with alcohol, so I deliberately leave them out ... I've fallen ill two or three times after taking them at the same time as alcohol, so ... Well, I threw up a lot, for three or four days ... three or four days after the party I was still throwing up and I had a fever ... as if I were ill, but several times ... Well, the first time I went to emergency because it wasn't normal to be ill four days after a party ... There was a party ... well, I don't know if it's useful to know. But I've been to a party where I was drugs and that's no good at all. You really shouldn't take drugs when you're on anticoagulants. (*woman, 20 years old, construction forewoman, DVT*)

This suspension stemmed from the patient's experiential knowledge, acquired outside the clinical setting. Although it followed a clear logic—anticipating and avoiding adverse effects—the patient framed it during the consultation as forgetfulness: "Sometimes I forget on the weekends." The physician offered only a standard reminder: "It's important not to forget."

Patients also sometimes asked doctors about pausing treatment to engage in high-risk activities. Physicians' responses varied as shown in the following consultation:

> The patient asks the doctor whether he can stop his medication in certain situations. After discussing surgery, he mentions skiing. "Skiing is risky. It's not recommended," the doctor replies. "What if I stop for a week?" asks the patient. "That's the strategy some patients adopt. I wouldn't recommend it. But some patients do it," the doctor responds. "How essential is skiing for you?" the doctor adds.

During the interview, the patient later told us:

> "I'm embarrassed because it's something I really enjoy, and it's a family activity. It would be a real sacrifice. I'm wondering what the real risk is if I suspend it for a few days ... I don't know what I'll do. I'll wait until the next hospital check-up and talk to the doctor." (*man, 52 years old, a PE episode after two DVT episodes*)

In another case, for example, a relatively young man (mid-50s), with two embolic episodes and a recent subdural hematoma following a ski accident, asked why he should resume treatment. The doctor acknowledged the bleeding risk but affirmed the need for long-term therapy given the severity and recurrence of events. Nonetheless, the doctor granted him discretion to suspend treatment temporarily—"for a few days or up to two weeks"—when engaging in risky activities.

These examples show that while formal decision-making authority often lies with clinicians, patients continue to negotiate treatment boundaries. Even when medical discretion is allowed, the decision to pause or adjust treatment remains emotionally and morally charged and socially situated.

Some patients formally adhered to the prescribed treatment, but negotiated the physician-recommended precautions implied, such as avoiding dangerous sports. Yet this adherence was often partial, selective, and context-sensitive.

> "When the anticoagulants were prescribed, [the doctor] told me, 'be careful, there are certain sports you can no longer do.' [The sport] I'm going to continue to do anyway. Because they told me not to ski, I do ski. But as I say, I'm enjoying life more. So I say to myself, anyway, if it has to happen, it's going to happen." (*Man, 39, food industry executive, PE*)

> "At work, yes, I'm careful. In fact, I'm careful in all circumstances. As soon as I see something sharp, I think twice. But this summer, I went surfing. I didn't say: 'Oh no, I won't surf because I might cut myself or lose all my blood.' No. If we go by that logic, we're not living anymore—everything becomes a factor [in hemorrhagic risk]. You can't live like that. That's life. But that doesn't mean you have to stop living." (*Woman, 29, communications manager DVT*)

In sum, patients did not merely adopt or reject medical advice. They adapted it, reinterpreted it, and at times resisted it—often through subtle, situated practices embedded in daily life. These forms of engagement move beyond the confines of the consultation and reflect a broader understanding of treatment as something lived and negotiated. Rather than conceptualizing agency as a singular decision point or a matter of rational preference, we see it emerge through moment-to-moment judgments, social responsibilities, and embodied experiences. These situated forms of agency reflect how the burdens and constraints of treatment are negotiated within the practicalities of daily life. As Mol (2008) argues in her "logic of care", patients do not simply follow rules or make choices. They engage in ongoing, situated experimentation—tinkering—to make treatment workable in ways that are responsive to embodied needs, moral concerns, and shifting circumstances. This approach expands our understanding of medical decision-making beyond a simple formulation of acceptance or refusal of medical advice.

## 4. Discussion

Our study of patients' attitudes toward treatment and medical decision-making invites a reconsideration of a crucial dimension of SDM: the centrality of patient preference and its close association with medical information, especially in the way it is operationalized by professionals. While general conceptualizations of SDM rightly emphasized the importance of the interaction within the medical encounter and the specific situation of the patient facing a decision, there remains a strong emphasis on medical information as the primary means to elicit preferences and achieve "individual self-determination [as] a desirable goal" (Elwyn et al., 2012). However, as sociological research has shown, medical information alone is not sufficient to foster meaningful patient involvement in decision-making and may hinder it (Joseph-Williams et al., 2014).

In this regard, the reluctance of many patients to articulate a clear preference, regarding whether to continue or discontinue treatment, serves as a starting point to explore factors that may hamper patient involvement in medical decision. We believe that patient hesitation should not be interpreted as disengagement. Rather, it prompts a reconsideration of how institutional framings of choice centered on information and autonomy may obscure the experiential, relational, and moral dimensions through which patients navigate uncertainty and responsibility.

First, this reluctance may reflect greater focus on the content of clinical exchange than on the relational dynamics that shape it. Clinical consultations are not neutral spaces; they are shaped by profound asymmetries in power and knowledge. In contexts where patients perceive themselves as epistemically subordinate, and where adherence to medical advice carries moral weight, patients may hesitate, or feel unable, to express their views. From this standpoint, involving patients in decision-making cannot be reduced to offering alternative treatment options. It must also entail legitimizing their standpoint and cultivating the relational conditions that make its expression possible, one of the
foundational tenets of SDM (Charles et al., 1999; Elwyn et al., 2012).

Second, taking an active role in deliberation is not the only manner patients may participate in medical decisions. Our fieldwork highlights the limitations of an SDM practice that risks reducing patient participation to the expression of explicit treatment preferences during consultations. As recent research shows, practical applications often rely on preference elicitation as the main mechanism for fostering involvement (Rake et al., 2022). Yet, our observations reveal dimensions of patients' treatment experiences that often resist translation into explicit preferences, particularly within consultations narrowly structured around biomedical agendas.

Rather than understanding patients’ perspectives solely through their stated preferences, we should acknowledge the importance of the needs, contexts, and lived experiences that shape their relationship to treatment. Recent work points in this direction. Viewing preference through “a logic of care” (Mol, 2008) means recognizing it not as a static expression of choice, but as a situated response shaped by patients’ lived experiences, relational contexts, and ongoing negotiations with illness. Rake and colleagues (2022) propose expanding the notion of “preference” by replacing it with “perspective.” Their notion of “personal perspective elicitation” intends to emphasize contextual understanding over isolated choices (see Weiner, 2022).

Finally, a logic of care broadens our understanding of patient agency beyond the notion of preferences. Following Rapley’s invitation to view decision-making as a process extending beyond the consultation room, our findings show that patients continue to adapt and adjust their treatment after a formal medical decision has been made. Treatment management thus emerges not as a single, discrete event but as a dynamic and ongoing process, continuously negotiated through multiple, situated choices. This suggests that a preference expressed during consultation should not be regarded as the ultimate expression of patient agency, but rather as one of its possible forms.

Although our research focused on decisions regarding chronic treatment for the prevention of VTE relapse, we believe that these insights may have broader relevance. Considering patients’ agency beyond the consultation, as well as the variety of ways in which patients express their perspectives beyond articulated preferences, may contribute to a more nuanced understanding of patient participation in treatment management across diverse clinical contexts.

## 5. Conclusions

We suggest that patient engagement in medical decisions must be reconceptualized beyond explicit preferences. Preferences often arise through embodied responses, moral reasoning, and affective negotiation. Patients participate not only through speech, but also through hesitation, silence, delegation, or practical tinkering. Acknowledging these forms of participation requires seeing decision-making as a shared and supported process, where clinicians legitimate patients to consider their values, needs and contexts when participating in medical decision-making. In this light, promoting participation means involving patients not only in choosing among predefined options but also in shaping what deserves to be discussed and valued.

Adopting a logic of care calls for attuning the communication and display of medical information and treatments across the trajectory of the disease to the multiple dimensions of patients’ lives. While SDM has the great merit of emphasizing patient engagement, its focus on preference elicitation remains too narrow to capture the intricacies of this process as lived and negotiated in everyday care.

### CRediT authorship contribution statement

**Mauro Turrini:** Writing – review & editing, Writing – original draft, Validation, Supervision, Resources, Project administration, Methodology, Investigation, Funding acquisition, Formal analysis, Data curation, Conceptualization.
**Roberta Valenti:** Writing – review & editing,

Writing – original draft, Investigation, Data curation. **Jeanette Bresson Ladegaard Knox:** Writing – review & editing, Writing – original draft, Investigation, Data curation. **Aarón Zau NKosi Rio:** Writing – review & editing, Writing – original draft, Investigation. **Mette N. Svendsen:** Supervision, Resources, Project administration, Investigation, Funding acquisition, Data curation. **Catherine Bourgain:** Supervision, Resources, Project administration, Funding acquisition, Data curation.

### Declaration of generative AI and AI-assisted technologies in the writing process

During the preparation of this work the authors used ChatGPT in order to enhance the clarity and fluency of the text. After using this tool, the authors reviewed and edited the content as needed and take full responsibility for the content of the publication.

### Declaration of competing interest

Nothing to declare.

### Acknowledgements

This article is presented on behalf of the MORPHEUS consortium (Prognosis iMprOvement of unpRovoked venous tHromboEmbolism Using perSonalized anticoagulant therapy), a multidisciplinary research project funded by the European Commission under the Horizon Europe programme (grant HORIZON-HLTH-2022-TOOL-11-01-2022). The consortium is coordinated by Francis Couturaud, MD, PhD, and Catherine Lemarie, PhD (University Hospital of Brest, INSERM, France) and brings together clinical researchers, social scientists, and data specialists from multiple European institutions (INSERM, Universities, Hospital centers, TodayTomorrow company). For further details on its structure, members, and research activities, please refer to the annex provided as supplementary material.

This article would not have been possible without the generous collaboration of the medical professionals and patients who allowed us to observe clinical consultations and who shared their experiences through in-depth interviews. Due to the ethical commitments of anonymity and confidentiality, we are unable to name them individually—but we extend our deepest gratitude to all of them. We hope that the reflections offered in this article do justice to the trust they placed in us.

Earlier versions of this work were presented by Mauro Turrini at the 4th Global Carework Summit: Histories and Futures of Care (Duke University, Durham, NC, June 7, 2025), under the title "Deciding with care: can it be a careful medical decision?", and at a seminar hosted by the Department of Sociology and Business Law at the University of Bologna on June 17, 2025, organized by Federico Chicchi, under the title "Idiosyncratic Information: The Patient and Care in Medical Decision-Making". We warmly thank the organizers—especially Federico Chicchi—and all participants for their thoughtful and constructive feedback. We are also grateful to the two anonymous reviewers of this journal for their insightful and generous comments, which helped us to significantly improve this article. Special thanks to Ernesto Ganguza for his deep engagement with this work. All

usual disclaimers apply.

<figure><img src="image_3.png" /></figure>

Funded by the
European Union

## Appendix A. Supplementary data

Supplementary data to this article can be found online at https://doi.org/10.1016/j.socscimed.2025.118801.
# Data availability

The data that has been used is confidential.

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