Balancing risks and rewards: How hematologists discuss uncertainty in allogeneic hematopoietic cell transplantation outcomes.

OBJECTIVE: Allogeneic hematopoietic cell transplant (alloHCT) offers many patients with blood cancers a chance of cure but carries risks. We characterized how hematologists discuss the high-risk, high-reward concept of alloHCT. METHODS: Qualitative analysis of video-recorded virtual encounters of hematologists who routinely perform alloHCT with actors portraying an older man recently diagnosed with high-risk myelodysplastic syndrome. RESULTS: Hematologists (n = 37) were a median age of 44 years, 65% male, and 68% white. They frequently used "teeter-totter" language that juxtaposed alloHCT's risks and rewards in a dynamic, quickly alternating fashion and communicated uncertainty in transplant outcomes. This dialogue oscillated between encouragement about alloHCT's potential for cure and caution about its risks and occurred within single speech turns and in exchanges between hematologist and patient. Fewer hematologists outlined their big-picture stance on transplant's risks and benefits early in the conversation. Meanwhile, hematologists varied in how they counseled patients to manage transplant-related uncertainty and consider treatment decision making. CONCLUSION: Hematologists use "teeter-totter" language to express hope and concern, confidence and uncertainty, and encouragement and caution about the high-risk, high-reward nature of alloHCT. PRACTICE IMPLICATIONS: Teeter-totter language may help frame big-picture content about alloHCT's risks and benefits that is essential for patient education and decision making.

Communication Strategies of Transplant Hematologists in High-Risk Decision-Making Conversations.

PURPOSE: Shared decision making (SDM) is essential to empower patients with blood cancers to make goal-concordant decisions about allogeneic hematopoietic cell transplantation. This study characterizes communication strategies used by hematologists to discuss treatment options and facilitate SDM with patients in this high-risk, high-reward setting. METHODS AND MATERIALS: We recruited US hematologists who routinely perform allogeneic hematopoietic cell transplant through email. Participants conducted up to an hour-long video-recorded encounter with an actor portraying a 67-year-old man with recently diagnosed high-risk myelodysplastic syndrome. We transcribed and qualitatively analyzed video-recorded data. RESULTS: The mean age of participants (N = 37) was 44 years, 65% male, and 68% White. Many hematologists included similar key points in this initial consultation, although varied in how much detail they provided. Their discussion of treatment options included transplant and chemotherapy and less commonly supportive care or clinical trials. They often emphasized transplant's potential for cure, discussed transplant chronologically from pretransplant considerations through the post-transplant course, and outlined risks, complications, and major outcomes. Hematologists referred to several elements that formed the basis of treatment decision making. The strength of their treatment recommendations ranged from strong recommendations for transplant or chemotherapy to deferrals pending more information. Hematologists also varied in the extent to which they indicated the decision was physician-driven, patient-led, or shared. CONCLUSION: The transplant decision-making discussion is complex. Identification of similar content areas used by hematologists can be used as the basis for a communication tool to help hematologists discuss allogeneic hematopoietic cell transplant with patients.

Relationships Between Advanced Cancer Patients' Worry About Dying and Illness Understanding, Treatment Preferences, and Advance Care Planning.

CONTEXT: Patients with advanced cancer often worry about dying. Less is known about the role of worry in decision making regarding future care. OBJECTIVES: To explore relationships between patients' worry about dying and their illness understanding, treatment preferences, and advance care planning (ACP). METHODS: This cross-sectional study used baseline data from a primary palliative care intervention trial. All participants had metastatic solid tumors. Using patients' response to I worry about dying from the Functional Assessment of Chronic Illness-Palliative Care survey instrument, univariate and multivariate analyses assessed associations with illness understanding, treatment preferences, and ACP. RESULTS: Of 672 patients, 47% reported worrying about dying not at all, whereas 9.7% worried quite a bit or very much. In regression analysis, compared with patients who reported not worrying about dying, those who reported high levels of worry were more likely to describe themselves as terminally ill (adjusted odds ratio [AOR] = 1.98; 95% CI = 1.10-3.54; P = 0.021) and prefer life-extending therapy over symptom-focused care (AOR = 2.61; 95% CI = 1.30-5.22; P = 0.007). They were less likely to have completed an advance directive (AOR = 0.49; 95% CI = 0.25-0.94; P = 0.032). The same relationships were seen using patients' response to I feel scared about my future from the Herth Hope Index. CONCLUSION: Patients with advanced cancer who worry about dying are more likely to identify as terminally ill and desire life-extending treatment and are less likely to engage in ACP. Understanding how patients cope with worry and make medical decisions is important in providing quality care to these patients.

When chemotherapy fails: Emotionally charged experiences faced by family caregivers of patients with advanced cancer.

OBJECTIVE: To explore family caregivers' emotional experiences while caring for patients with advanced cancer and navigating distressing information, awareness of dying, and difficult decisions. METHODS: Qualitative descriptive study of semi-structured interviews with 92 bereaved caregivers of patients with advanced cancer. Interviews explored caregivers' experiences as patients transitioned out of active cancer treatment and neared the end of life. RESULTS: Included in caregivers' characterization of this transition time were three particularly emotionally charged experiences. The first occurred when caregivers felt jolted into awareness that patients were dying.They were startled to realize that patients would die sooner than expected; some expressed frustration that they had not been adequately warned. In the second, caregivers felt conflicted when involved in decisions that pitted patients' preferences against what caregivers felt patients needed, resulting in ambivalence, guilt, and grief. Thirdly, caregivers who felt they did their best for patients expressed fulfillment and gratitude. CONCLUSION: Caregivers of patients with advanced cancer face unique, emotionally charged experiences that can lead to distress and affect care at the end of life. PRACTICE IMPLICATIONS: Awareness of these situations may help oncology teams to provide sufficient guidance and support, partner with caregivers to clarify patients' needs, and deliver higher quality care.

Promoting End-of-Life Discussions in Advanced Cancer: Effects of Patient Coaching and Question Prompt Lists.

Purpose To build on results of a cluster randomized controlled trial (RCT) of a combined patient-oncologist intervention to improve communication in advanced cancer, we conducted a post hoc analysis of the patient intervention component, a previsit patient coaching session that used a question prompt list (QPL). We hypothesized that intervention-group participants would bring up more QPL-related topics, particularly prognosis-related topics, during the subsequent oncologist visit. Patients and Methods This cluster RCT with 170 patients who had advanced nonhematologic cancer (and their caregivers) recruited from practices of 24 participating oncologists in western New York. Intervention-group oncologists (n = 12) received individualized communication training; up to 10 of their patients (n = 84) received a previsit individualized communication coaching session that incorporated a QPL. Control-group oncologists (n = 12) and patients (n = 86) received no interventions. Topics of interest identified by patients during the coaching session were summarized from coaching notes; one office visit after the coaching session was audio recorded, transcribed, and analyzed by using linear regression modeling for group differences. Results Compared with controls, more than twice as many intervention-group participants brought up QPL-related topics during their office visits (70.2% v 32.6%; P < .001). Patients in the intervention group were nearly three times more likely to ask about prognosis (16.7% v 5.8%; P =.03). Of 262 topics of interest identified during coaching, 158 (60.3%) were QPL related; 20 (12.7%) addressed prognosis. Overall, patients in the intervention group brought up 82.4% of topics of interest during the office visit. Conclusion A combined coaching and QPL intervention was effective to help patients with advanced cancer and their caregivers identify and bring up topics of concern, including prognosis, during their subsequent oncologist visits. Considering that most patients are misinformed about prognosis, more intensive steps are needed to better promote such discussions.

Relationships between personal attitudes about death and communication with terminally ill patients: How oncology clinicians grapple with mortality.

OBJECTIVE: Clinician discomfort with death may affect care of patients but has not been well-studied. This study explores oncology clinicians' attitudes surrounding their own death and how these attitudes both affect and are affected by their care of dying patients and their communication with them. METHODS: Qualitative interviews with physicians (n=25), nurse practitioners (n=7), and physician assistants (n=1) in medical or hematologic oncology clinical practices about communication styles, care of terminally ill patients, and personal perspectives about mortality. RESULTS: Clinicians described three communication styles used with patients about death and dying: direct, indirect, or selectively direct. Most reported an acceptance of their mortality that was "conditional," meaning that that they could not fully know how they would respond if actually terminally ill. For many clinicians, caring for dying patients affected their outlook on life and death, and their own perspectives on life and death affected their approach to caring for dying patients. CONCLUSION: An awareness of personal mortality may help clinicians to discuss death more openly with patients and to provide better care. PRACTICE IMPLICATIONS: Efforts to promote self-awareness and communication training are key to facilitating clear communication with and compassionate care of terminally ill patients.