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JAMA network open · 2026

Навигация Прогнозного диалога во время серьёзных болезнетворных споров.

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Borregaard Myrhøj C, Jacobsen J, LeBlanc TW, El-Jawahri A, Jarden M, Clemmensen SN, von Heymann A

Аннотация

ВАЖНОСТЬ: Двойное осознание, способность жить конструктивно, готовясь к концу жизни, имеет ключевое значение для разговоров о серьезных заболеваниях. В гематологии прогнозируемая неопределенность и ожидания новых методов лечения часто задерживают прогнозируемый диалог, ограничивая возможности для развития у пациентов и лиц, обеспечивающих уход, двойного понимания. ЦЕЛЬ: Изучение вопроса о том, каким образом пациенты, те, кто ухаживает за больными, и гематологические врачи, обученные разговорам о серьезных заболеваниях, ведут перспективный диалог и как это может способствовать двойному осознанию.DESIGN, SETTING И УЧАСТНИКИ: В этом качественном исследовании анализируются аудиозаписи разговоров о серьезных заболеваниях, проведенных в период с ноября 1, 2022, и январь 31, 2025:: среди пациентов, лиц, обеспечивающих уход, и врачей, занимающихся лечением гематологовых злокачественных опухолей в рамках общенационального, датского кластерного испытания (исследование ПАКТ; запланированные последующие мероприятия 18 месяцев), с использованием рефлексивного тематического анализа. Twenty-five В процентах seventy-five Были отобраны приемлемые аудиозаписи для изменения демографических характеристик пациентов (возраст, пол и диагностика), отношений с воспитателями, лечащими врачами и предполагаемых целей лечения пациентов с ограниченными возможностями лечения от 5 Датские отделения гематологии. ЭКСПОРЕС: Датская программа лечения серьезных заболеваний включает в себя подготовку врачей, средства связи, подготовительные материалы, документацию и запланированные беседы. ОСНОВНЫЕ РЕЗУЛЬТАТЫ И МЕРЫ: Коммуникационная динамика того, как пациенты, те, кто ухаживает за больными, и врачи ведут прогнозительный диалог в разговорах о серьезных заболеваниях в гематологии.РЕЗУЛЬТАТЫ: Всего 25 Дайады, заботящиеся о пациенте.50 :: лица; средний возраст пациентов, 73 [67-79] годы; 11 [Подлинный текст на английском языке]44%] женщин и 14 [Подлинный текст на английском языке]56%] пациенты мужского пола; средний возраст ухода, 66 [52-72] годы; 20 [Подлинный текст на английском языке]80%] женщин и 5 [Подлинный текст на английском языке]20%] мужчин, обеспечивающих уход) и 16 Группы врачей-медсестёр32 Клиники, средний возраст врача, 46 [41-48] годы; 11 [Подлинный текст на английском языке]69%] женщин и 5 [Подлинный текст на английском языке]31%] мужчина; средний возраст медсестры, 38 [32-46] годы; 16 [Подлинный текст на английском языке]100%] (женщины) изучались. У пациентов была множественная миелома.8 [Подлинный текст на английском языке]32%]), лимфома (8 [Подлинный текст на английском языке]32%]), миэлодиспластический синдром (6 [Подлинный текст на английском языке]24%]) или острой лейкемии (3 [Подлинный текст на английском языке]12%]) Всего 18 (В тыс.72%) были зачислены на лечение рецидивистской болезни. Подготовительные материалы и начало разговора с врачами заложили основу для перспективного диалога. Клиники последовали словесным и эмоциональным сигналам пациентов о готовности или нерешительности к прогнозируемому диалогу и соответствующим образом скорректировали глубину и время появления вероятностной информации. Прогнозирующая неопределенность использовалась для признания как реалистичных озабоченностей, так и надежд. ВЫВОДЫ И СООБРАЖЕНИЕ: В этом качественном исследовании, посвященном разговорам о серьезных заболеваниях между пациентами с злокачественными гематологическими опухолями, лицами, обеспечивающими уход за ними, и врачами, внимательное отношение врачей к резкой готовности пациентов и лиц, обеспечивающих уход за больными, позволило провести перспективный диалог. Прогнозирующая неопределенность служила конструктивным элементом и ресурсом, а не барьером, поддерживая подготовку пациентов к концу жизни, продолжая при этом жить конструктивно.
Оригинал публикации

Navigating Prognostic Dialogue During Serious Illness Conversations.

IMPORTANCE: Double awareness, the ability to live meaningfully while preparing for the end of life, is central to serious illness conversations. In hematology, prognostic uncertainty and expectations of novel therapies often delay prognostic dialogue, limiting opportunities to cultivate double awareness in patients and caregivers.

OBJECTIVE: To explore how patients, caregivers, and hematology clinicians trained in serious illness conversations navigate prognostic dialogue and how this may facilitate double awareness.

DESIGN, SETTING, AND PARTICIPANTS: This qualitative study analyzed audio-recorded transcripts of serious illness conversations conducted between November 1, 2022, and January 31, 2025, among patients, caregivers, and clinicians treating hematologic malignant neoplasms in the intervention arm of a nationwide, Danish cluster randomized trial (ACT study; planned follow-up of 18 months), using reflexive thematic analysis. Twenty-five of seventy-five eligible audio recordings were selected for variation in patient demographics (age, sex, and diagnosis), caregiver relationship, treating clinicians, and perceived goals of treatment among patients with limited treatment options from 5 Danish hematology departments.

EXPOSURES: The Danish Serious Illness Care Program includes clinician training, communication tools, preparatory materials, documentation, and scheduled conversation slots.

MAIN OUTCOMES AND MEASURES: Communicative dynamics of how patients, caregivers, and clinicians navigate prognostic dialogue in serious illness conversations in hematology.

RESULTS: A total of 25 patient-caregiver dyads (50 individuals; median [IQR] patient age, 73 [67-79] years; 11 [44%] female and 14 [56%] male patients; median [IQR] caregiver age, 66 [52-72] years; 20 [80%] female and 5 [20%] male caregivers) and 16 physician-nurse teams (32 clinicians; median [IQR] physician age, 46 [41-48] years; 11 [69%] female and 5 [31%] male; median [IQR] nurse age, 38 [32-46] years; 16 [100%] female) were studied. Patients had multiple myeloma (8 [32%]), lymphoma (8 [32%]), myelodysplastic syndrome (6 [24%]), or acute leukemia (3 [12%]). A total of 18 (72%) were enrolled during treatment of relapsed disease. Preparatory materials and clinicians' conversation opening laid the foundation for prognostic dialogue. Clinicians followed patients' verbal and emotional cues of readiness or hesitation for prognostic dialogue and adjusted the depth and timing of prognostic information accordingly. Prognostic uncertainty was used to acknowledge both realistic concerns and hopes.

CONCLUSIONS AND RELEVANCE: In this qualitative study of serious illness conversations among patients with hematologic malignant neoplasms, their caregivers, and clinicians, clinicians' attentiveness to patients' and caregivers' oscillating readiness enabled prognostic dialogue. Prognostic uncertainty served as a constructive element and resource rather than a barrier, supporting patients' preparation for the end of life while continuing to live meaningfully.

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This is an open access article distributed under the terms of the CC-BY-NC-ND License, which does not permit alteration or commercial use, including those for text and data mining, AI training, and similar technologies.

Introduction

Living with serious illness involves confronting mortality and preparing for the end of life while remaining meaningfully engaged in life, a tension termed double awareness . 1 , 2 Fostering double awareness can support adaptation to serious illness and align care with patient goals. 2 , 3 , 4 Clinicians support this process through serious illness conversations (SICs), structured, iterative conversations that explore patients’ illness understanding, values, goals, and priorities. 5

Central to fostering double awareness is clinical attunement , defined as clinicians’ ability to sense patients’ readiness for prognostic dialogue and respond flexibly to maintain emotional safety. 6 , 7 In palliative care, double awareness and clinical attunement are integrated into clinical practice and professional education. 8 However, most nonpalliative specialists lack formal training in these concepts. 9 , 10 Such training is particularly important in hematology, where novel therapies have increased survival and prognostic uncertainty and patients face unpredictable disease courses alongside persistent possibilities of cure or durable remission. 9 , 11 , 12 , 13 This uncertainty makes prognostic dialogue even more important because patients must prepare for a broad range of possibilities, yet the same uncertainty is frequently cited as a reason why clinicians delay these discussions, fearful of undermining hope or causing emotional overwhelm. 12 , 14 , 15 Hematology clinicians may benefit from structured communication approaches that cultivate attunement to patients’ readiness and foster double awareness in dialogue about illness progression, anticipated treatments, and expected function. The Serious Illness Conversation Guide (SICG) is designed to support these discussions, exploring patients’ illness understanding, preferred level of information, hopes, and worries and alternating between present-focused and future-oriented questions, balancing both dimensions of double awareness. 5 , 16 This study explores how patients, caregivers, and hematology clinicians trained in SICs navigate prognostic dialogue and how this may facilitate double awareness.

Methods

Design

We previously adapted the Serious Illness Care Program (SICP) 17 to a Danish hematologic context and are currently conducting a nationwide cluster randomized trial (ACT) across 7 hospitals with hematology departments in Denmark. 18 This qualitative study is an analysis of selected audio-recorded conversations from the ACT intervention arm. The study complies with the Helsinki Declaration, 19 was approved by the Data Protection Office of the Capital Region of Denmark, and was deemed exempt from ethical approval by the Ethics Committee of the Capital Region of Denmark. Written informed consent was obtained from all participants. This study followed the Consolidated Criteria for Reporting Qualitative Research ( COREQ ) reporting guideline. 20

The Danish Adaptation of SICP

The Danish adaptation of SICP was developed in collaboration with patients, caregivers, and clinicians to ensure feasibility within hematology, where prognostic trajectories are often uncertain, treatment goals may shift rapidly, and Danish practice emphasizes interdisciplinarity. The Danish SICP includes interdisciplinary collaboration between physicians (hematology specialists or hematologists in training) and nurses working with them in shared clinical practice (hereafter clinicians), who completed a joint 7-hour training. The training introduced the SICG as a flexible conversation guide, emphasizing trust-building and exploration of illness understanding, goals, values, and worries (eFigures 1 and 2 in Supplement 1 ). Training also included explicit attention to communication about prognostic uncertainty and how to follow patients’ and caregivers’ natural oscillation between topics rather than adhering to a fixed, linear script. Two authors (C.B.M. and S.N.C.) were teachers and facilitators, and an experienced psychologist provided real-time feedback. Subsequently, clinicians participated in 1.5-hour group supervision every third month, facilitated by a psychologist and the first author (C.B.M.), to discuss clinical cases and reinforce SICG use. Patients and caregivers received preparatory materials to support reflection on personal goals, values, strengths, preferences for information, and considerations about future care. Sixty minutes were allocated for each SIC, including structured documentation in the medical record. All conversations were conducted by interprofessional physician-nurse teams and audio-recorded for the ACT study.

Setting and Participants

Patients and their caregivers were eligible for the ACT study if patients had hematologic malignant neoplasms with limited treatment options and for the qualitative study if they were in the intervention group, had participated in an SIC between November 1, 2022, and January 31, 2025, and had completed baseline assessments, as described in the trial protocol. 18 Participants were recruited from 5 Danish hematology departments.

Sampling and Data Collection

Of 75 eligible audio-recordings, 25 were purposefully selected using a sampling matrix based on site, diagnosis, age, caregiver relationship, sex, and perceived treatment goals to ensure variation across these characteristics. Sample size was guided by the concept of information power, reflecting the expected richness of the data and the study aim rather than statistical representativeness. 21 A nongenerative speech-to-text software (Viceron Transcription, BETA-0.1.0, Viceron ApS) transcribed recordings, and the first author (C.B.M.) corrected errors and assigned speaker attribution. Median (range) conversation length was 58 (31-57) minutes.

Statistical Analysis

Analysis followed reflexive thematic analysis by Braun and Clarke. 22 , 23 , 24 We used an inductive approach to remain close to interactional data and identify patterns in how patients, caregivers, and clinicians navigated prognostic dialogue within SICs. We incorporated the concept of double awareness during interpretation to situate the findings within existing literature. We conducted the analysis from March to October 2025, organizing data in Microsoft Word, version 365 (Microsoft Corp) using hands-on coding and interpretation. Initial coding was conducted by 3 of the authors (C.B.M., S.N.C., and A.v.H.), who independently coded a subset of transcripts and subsequently compared interpretations and refined preliminary codes. Preliminary themes were refined in collaboration with an additional author (J.J.) and subsequently challenged and validated through further discussions with 3 authors (T.W.L., A.E.-J., and M.J.), ensuring a rigorous, multiperspective interpretive process. The team included professionals from medicine, nursing, and psychology with expertise in oncology, palliative medicine, hematology, and psycho-oncology. This diversity enriched the analysis by integrating both clinical and psychosocial perspectives. Informed by previous literature and clinical experience, we approached the analysis with a preunderstanding that clinicians may avoid prognostic disclosure due to uncertainty or deliver prognostic information in ways that risk overwhelming patients and caregivers and that patients and caregivers might respond with varying degrees of engagement or withdrawal. Throughout the analysis, preunderstandings were made explicit and reflexively examined to remain open to alternative interpretations. Disagreements were addressed through iterative team discussions. Trustworthiness was enhanced through illustrative quotations, multisite and purposeful sampling, and a reflexive analytic process, including iterative team discussions and explicit reflection on authors’ preunderstandings, supporting credibility, transferability, dependability, and confirmability.

Results

The study included 25 SICs involving 16 physician-nurse teams (32 clinicians; median [IQR] physician age, 46 [41-48] years; 11 [69%] female and 5 [31%] male; median [IQR] nurse age, 38 [32-46] years; 16 [100%] female) and 25 patient-caregiver dyads (50 individuals; median [IQR] patient age, 73 [67-79] years; 11 [44%] female and 14 [56%] male patients; median [IQR] caregiver age, 66 [52-72] years; 20 [80%] female and 5 [20%] male caregivers, with 16 [64%] primary partners) (eTables 1 and 2 in Supplement 1 ). A total of 3 patients (12%) had acute leukemia, 8 (32%) had multiple myeloma, 8 (32%) had lymphoma, and 6 (24%) had high-risk myelodysplastic syndrome. The median (IQR) number of treatments was 2 (2-3), and 18 patients (72%) were enrolled during treatment of relapsed disease. Educational backgrounds varied among both patients and caregivers.

Before the conversation, the perceived treatment goal was identified as cure by 6 patients (24%) and 7 caregivers (28%), life prolongation by 12 patients (48%) and 11 (44%) caregivers, and symptom relief by 6 (24%) in both groups; 1 (4%) in each group was uncertain. Transcripts documented how clinicians followed their training and opened the conversation on patients’ terms by asking what was most important to patients and caregivers in their current and future situation, fostering trust and safety to engage in prognostic dialogue. Clinicians invited patients and caregivers to reflect on the preparatory material, supporting active participation. Two overarching themes capture how patients, caregivers, and clinicians navigated prognostic dialogue: (1) clinicians adapt to patients’ and caregivers’ shifting readiness to discuss prognosis and (2) patients, caregivers, and clinicians use prognostic uncertainty to balance hope and realism (eFigure 3 in Supplement 1 ).

Adapting to Shifting Readiness to Discuss the Future

Patients and caregivers expressed fluctuating readiness to discuss prognosis. Readiness was expressed along a spectrum of diverse, sometimes contradictory, cues from both patients and caregivers, who alternated among openness, hesitation, and withdrawal. Clinicians stayed attuned to these cues and adjusted the pace and focus of the conversation to support engagement in prognostic dialogue while avoiding emotional overwhelm.

Patients’ Expressions of Readiness

Patients’ cues ranged from subtle hints to direct invitations to discuss prognostic information and often included explicit boundaries, such as wanting as much information as possible but not time estimates. In articulating both openness and limits, patients and caregivers actively defined the conditions under which they were ready for prognostic dialogue. Such expressions created opportunities for clinicians to engage while signaling when caution was needed to avoid overwhelming ( Table 1 ). Importantly, readiness was not constant throughout a conversation. Patients and caregivers often oscillated between engaging in and withdrawing from prognostic dialogue, sometimes within few statements.

Table 1.
Examples of Patient Readiness to Discuss the Future

ExampleInterpretation
Caregiver (69-year-old female spouse to patient with lymphoma): “We haven’t talked much about the future before, but now that things are worse, it’s become more relevant.”Implicit readiness, linked to illness progression
Patient (82-year-old woman with multiple myeloma): “If we knew what was ahead, we could decide how to spend our days together.”Explicit readiness, tied to values
Patient (73-year-old man with acute leukemia): “I want to know everything, except that I won’t live until January.”Explicit readiness, combined with explicit boundaries

Clinicians’ Active Responses to Patients’ and Caregivers’ Cues

Clinicians stayed closely attuned to these micromovements and actively adjusted the pace or shifted the focus to prevent the conversation from becoming emotionally overwhelming, reengaging when readiness reemerged. This responsiveness was enacted through moment-to-moment reaction to subtle cues. The example given in Table 2 illustrates this active attentiveness because the clinician resists narrowing the dialogue to the physical domain and instead creates space for emotional and existential meanings beneath the symptom.

Table 2.
Example of Subtle Cues and Clinicians’ Attentiveness in 1 Conversation

ExampleInterpretation
Patient (67-year-old patient with high-risk myelodysplastic syndrome): “Yes, physically, the biggest problem is the fatigue…Whether I have six months or two years, I don’t know. But how my trajectory will be, that is really the main thing.”Symptom talk transitions into a prognostic cue as the patient expresses readiness by voicing the challenge of uncertainty
Nurse: “Yes, so it’s mostly the psychological impact?”Attempts to mirror and confirm the implicit psychological concern
Patient: “Yes…” (becomes emotional)
Nurse: “It is a difficult matter.”Emotional response acknowledges the difficulty
Patient: “Well, I’ve come to terms with the fact that I’m going to die…But why am I so tired now?”Signals diminished readiness, closing the topic of dying and redirecting attention to a symptom that feels more manageable
Nurse: “Yes, the process of getting there.”Resisting the chance to “fix” the symptom and keeping the door open by recognizing the existential dimension of the symptom

Oscillations between engagement and withdrawal from prognostic dialogue were observed throughout conversations. In the example given in Table 3 , clinicians interpret the patient’s initial refusal as a temporary cue rather than an end point and adaptively reengage when signs of readiness reemerge.

Table 3.
Example of Oscillation Between Refusal and Reengagement and Clinicians’ Response in 1 Conversation

ExampleInterpretation
Physician: “If your illness were to get worse, how much would you want to know?”Invites prognostic dialogue beginning with wishes for level of information
Patient (76-year-old patient with multiple myeloma): “Actually, nothing…I don’t think I could handle knowing about it.”Initial refusal, expressing unreadiness
The clinicians respected this and shifted the focus toward the caregiver. However, later in the conversation, the caregiver reopened prognostic discussion, and the patient followed.
Caregiver (48-year-old adult child): “You need to know whether something is changing in the illness. And right now, you are doing well, and that is what we hold on to, right?”Caregiver gently reopens and facilitates oscillation toward discussing prognosis
Patient: “So, can I ask…Now things are running smoothly, but can the illness suddenly change and progress?”Patient reengages and expresses increasing readiness by asking for potential change
Physician: “It is rare for myeloma to change quickly…usually you first see small changes in the blood samples, and then a month or two later a bit more. At that point, we might adjust treatment, but we usually have time to talk before making changes.”Provides concrete information, balances hope with realism, and paces information carefully to match the patient’s tentative readiness
Patient: “So it can stretch over years even at this time point?”Reengages, this time by testing a more hopeful scenario
Physician: “Yes, it’s possible. But we don’t have a crystal ball.”Acknowledges uncertainty, avoids false certainty.

Clinicians adapted to patients’ and caregivers’ shifting readiness by respecting refusal, pacing information, balancing hope with realism, and gently acknowledging uncertainty. These responses supported patients’ oscillation between initial refusal and subsequent reengagement.

Oscillating Readiness Within the Dyad

In dyads, readiness often oscillated and was not always aligned. Patients and caregivers sometimes occupied divergent positions, with one signaling openness and the other expressing reluctance or hesitation. Such divergence required clinicians to respond to both positions simultaneously, validating hesitation, supporting openness, and creating a shared space that allowed the conversation to move forward without forcing alignment or overwhelming either party ( Table 4 ). The example given in Table 4 demonstrates how clinicians sustained dialogue by being attentive to cues and responsive to divergent readiness during the conversations and within dyads, validating hesitation while supporting openness and thereby enabling prognostic dialogue.

Table 4.
Example of Divergent Readiness Within a Dyad in 1 Conversation

ExampleInterpretation
Caregiver (67-year-old spouse): “Talking about the end…I didn’t think about discussing that now.”Signals reluctance to talk about the end of life
Patient (70-year-old patient with acute leukemia): “No, but it doesn’t hurt to talk about it.”Expresses openness to prognostic discussion, diverging from the caregiver’s stance
Caregiver: “Well…I don’t really know how.”Expresses insecurity and hesitation but also signals openness to receive help to talk about it
Nurse: “It isn’t easy. Even though you love each other, it can be a big thing to talk about.”Validates and normalizes the difficulty, reducing tension in the dyad
Caregiver: “Yes…he has said he wants to be at home when it happens.”Opens up toward values and planning, allowing progress despite the initial hesitation

In sum, readiness for prognostic dialogue oscillated throughout the conversations. Patients and caregivers expressed engagement and withdrawal through verbal cues, which clinicians used to adjust the timing, pace, and depth of prognostic dialogue. This approach allowed patients to move between focusing on living in the present and considering plans for the end of life without becoming emotionally overwhelmed.

Use of Prognostic Uncertainty to Balance Hope and Fear

Prognostic uncertainty functioned as a conversational resource rather than a barrier. Patients and caregivers used uncertainty to express both hope and fear, whereas clinicians used it to discuss prognosis in ways that maintained emotional safety and sustained hope. Specifically, uncertainty helped clinicians acknowledge limits without closing off possibilities, as illustrated in the following physician quotation: When we stop giving blood transfusions, it will accelerate the process. But no one can say whether we’re talking days or weeks…maybe months, but not years.

Clinicians also used uncertainty to normalize unpredictability and refocus the dialogue on meaningful living. One physician noted: We have no crystal ball to predict the future, and no one really can. Given that uncertainty, what would you want things to look like if you were to become more unwell? Thus, uncertainty allowed perspectives of decline and hope to coexist, supporting awareness and sustaining engagement without overwhelming.

The examples given in Table 5 show first how clinicians express and use prognostic uncertainty and second how uncertainty allows a patient to oscillate between realism and hope within the same conversation. Uncertainty was used by all participants to oscillate between temporal hopes, which anchor patients in realistic short-term goals and more hopeful long-term wishes. The movement between short- and long-term goals did not reflect denial of the prognosis but rather a strategy to manage the emotional burden of serious illness, which could intensify with exclusive short-term focus. Thus, prognostic uncertainty served as a dual resource: the possibility of decline legitimized preparation for end of life and the possibility of more time sustained hope and engagement in meaningful living, together constituting a form of double awareness that supported ongoing prognostic dialogue.

Table 5.
Example of Uncertainty as a Resource in 2 Conversations
Abbreviation: NR, not reported. a Intentional absence of interpretation.

ExampleInterpretation
Clinicians’ use of uncertainty
Physician: “When we talk about the future, there’s always the possibility that treatment may not work. That uncertainty gives us a chance to discuss plan B. I don’t think we are there yet, but it may come, and that possibility makes it worth talking about. It doesn’t have to dominate, we can open the box, talk about it, and then set it aside again.”Uses prognostic uncertainty as an opening for discussing if things do not go as hoped (plan B)
Caregiver (79-year-old spouse): “You never really know when your time is up. You should always have those things in order.”NR a
Nurse: “Yes, but it’s different when it gets this close.”Validates the need for preparation while recognizing that it is harder to discuss near the end of life
Caregiver: “Yes, you just keep pushing it ahead of you.”NR
Patient (84-year-old patient with lymphoma): “Yes, we do.”NR
Physician: “That’s what I mean by the box…it’s about figuring out what brings you quality in life, not being consumed by worry.”Manages uncertainty by offering a metaphor (the box) to contain uncertainty and worry; the box lets the uncertainty temporarily be pushed aside
Caregiver: “I think it’s a really good idea to get things in order. Like you said. I believe that.”NR
Patient: “Yes, we should talk about it, but it’s damn hard.”NR
Physician: “Yes, it’s not easy.”Validates the difficulty and uses uncertainty to sustain engagement without overwhelming
Patient’s use of uncertainty
Patient: “We don’t know. But we hope to reach the diamond wedding anniversary by the end of this year. It’s like the crown jewel of marriage.”Acknowledges uncertainty while anchoring realistic hope in a near-term milestone
A bit later in the conversation
Patient: “I just hope I get to see my foals grow up…you know, when they’re three or four years old. That’s what I’m hoping for.”Uncertainty allows oscillation from realism to longer-term hope
Physician: “It seems the horses have always been your source of strength and joy at home. What helped you get up and out, even when things were heavy.”NR

Discussion

This study provides empirical insight into how clinicians, patients, and caregivers navigate prognostic dialogue in SICs in hematology. The 2 overarching themes describe how clinicians actively responded to patients’ and caregivers’ oscillating readiness for prognostic dialogue and how clinicians, patients, and caregivers used prognostic uncertainty to move between realistic short-term goals and more hopeful long-term wishes. In other words, clinicians demonstrated clinical attunement by following patients’ and caregivers’ oscillations between hope and realism and by acknowledging uncertainty rather than avoiding it.

Although theory has described attunement and double awareness, few studies 25 , 26 have examined how these processes unfold empirically within clinical encounters and none within hematology. Prognostic uncertainty is often viewed as a communication barrier, 12 , 14 , 15 , 27 yet it is also a core communicative task that clinicians must actively navigate. 27 Our study extends existing work by showing empirically how clinicians in hematology used prognostic uncertainty not as a barrier but as a resource. Within SICs, uncertainty legitimized discussions about possible decline while simultaneously sustaining hope for a meaningful future. By acknowledging rather than avoiding uncertainty, clinicians fostered dialogue that balanced awareness of mortality with continued engagement in life. These findings support the conceptual argument that uncertainty can be an integral and constructive aspect of prognostic discussions in serious illness, 27 , 28 contrasting with the literature that identifies uncertainty primarily as a barrier.

Uncertainty has previously been illustrated in various ways. A previous qualitative study among adults with solid tumors described patients as “walking two paths simultaneously,” confronting the seriousness of their condition while consciously choosing to focus on life. 29 This metaphor mirrors the oscillation we observed during SICs, in which patients and caregivers moved between realism and hope even within a few statements. A recent systematic review found variation in this balance across the illness trajectory, with earlier stages requiring greater flexibility and terminal phases requiring greater emotional preparation and acceptance. 30 These findings underscore that individual readiness changes during the illness trajectory and requires clinician attentiveness. Our data illustrate how clinicians can recognize and respond to these changes by attending to the patients’ and caregivers’ cues, thereby facilitating double awareness. 31

A key insight from this study is that clinicians’ attunement, understood as their moment-to-moment adjustment to patients’ and caregivers’ cues, seemed strongly shaped by the conversational context itself. Unlike routine hematology consultations focused on assessment and information exchange, SICs provided a different structure and purpose. Through training, clinicians were explicitly oriented toward exploring patients’ hopes, worries, and understanding of prognosis. The Danish adaptation emphasized communicating about prognosis under uncertainty, reflecting a defining feature of hematologic malignant neoplasms, which may have influenced the findings. Clinicians were also trained to use the SICG flexibly, following patients’ and caregivers’ oscillating readiness rather than adhering to a fixed script. Preparatory materials helped patients be ready to engage with these themes. 32 Dedicated time and interdisciplinarity further supported clinicians in exploring and responding to emotional cues. 32 , 33 These contextual elements enabled communication to move beyond information transfer toward attuned interaction, helping clinicians to match their responses to patients’ readiness.

Our findings suggest that hematology clinicians can acquire communication skills through structured training and follow-up reflective supervision. A meta-analysis of 11 trials shows that communication training improves clinicians’ empathy and emotional communication. 34 Additionally, a study of communication skills training for hospital oncology and hematology physicians (n = 19) highlights how specialty-specific attitudes and beliefs shape engagement, underscoring the need to tailor communication training to each specialty’s culture. 35 This study represents such an adaptation, translating palliative communication approaches into hematology-specific training.

Lastly, our findings extend theoretical work on double awareness and clinical attunement by showing, in empirical SICs in hematology, how patients and caregivers express double awareness through oscillation and how clinicians respond to these expressions. Although our findings were generated in hematology, the observed oscillation between hope and realism and the communicative use of uncertainty are likely relevant to SIC across oncology, 29 , 30 including solid tumor settings, for which the SICG was originally developed. 17

Limitations

This study has limitations. Although this study included a large dataset of 25 audio-recorded SICs across multiple sites, diagnoses, and clinician teams, several limitations should be noted. As participation in the trial was voluntary, patients who agreed to take part may differ in their readiness for prognostic dialogue from those who declined, potentially limiting the transferability of our findings. Two authors (C.B.M. and S.N.C.) participated as teachers and facilitators in the training sessions, which potentially introduced interpretive bias during analysis. To address this, we used a reflexive analytic approach with iterative team discussions and critical examination of assumptions during theme development. Because each dyad contributed only one recorded SIC, we could not examine longitudinal shifts in communicative processes or double awareness. Although training and organizational support may facilitate double awareness in the moment, its development across the illness trajectory remains unknown. Our analysis relied solely on audio-recordings, restricting insight into nonverbal communication. Moreover, we could not compare SICs with routine clinical conversations without use of the guide; thus, we cannot determine whether similar dynamics occur outside the structured format.

Conclusions

In this qualitative study of patients with hematologic malignant neoplasms, their caregivers, and clinicians participating in a nationwide Danish cluster randomized trial, patients’ and caregivers’ readiness oscillated within single conversations, and clinicians trained in SICs followed these shifts through moment-to-moment adjustments. Such attunement may not only facilitate prognostic dialogue but also foster trust, reinforcing the relationship between patients, caregivers, and clinicians. Prognostic uncertainty helped balance hope and realism and sustained prognostic dialogue. This finding supported that uncertainty can be a constructive aspect of prognostic dialogue in serious illness, contrasting with literature that frames uncertainty as a barrier. Our findings highlight the importance of communication training for hematology clinicians and suggest that structured approaches, such as the SICG, may help clinicians respond to shifting readiness, engage constructively with uncertainty, and facilitate patients’ double awareness to prepare for the end of life while continuing to live meaningfully.

eFigure 1. Serious Illness Conversation Guide (SICG)

eFigure 2. Serious Illness Conversation Guide (SICG) – Joint Agenda

eFigure 3. Figure of Findings

eTable 1. Patient and Caregiver Characteristics

eTable 2. Physician and Nurse Characteristics

Data Sharing Statement

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Associated Data

Supplementary Materials

eFigure 1. Serious Illness Conversation Guide (SICG)

eFigure 2. Serious Illness Conversation Guide (SICG) – Joint Agenda

eFigure 3. Figure of Findings

eTable 1. Patient and Caregiver Characteristics

eTable 2. Physician and Nurse Characteristics

Data Sharing Statement

ИП Урсолов Владлен Сергеевич

ИНН 500118482352 · ОГРНИП 314500117700049

Реквизиты и контакты