Professional Experiences and Career Trajectories of Mid- to Senior-Career Women Clinician-Scientists: A Qualitative Study.

Importance: Despite increasing evidence and recognition of persistent gender disparities in academic medicine, qualitative data detailing the association of gender-based experiences with career progression remain sparse, particularly at the mid- to senior-career stage. Objective: To investigate the role gender has played in everyday professional experiences of mid- to senior-career women clinician-scientists and their perceptions of gender-related barriers experienced across their careers. Design, Setting, and Participants: In this qualitative study, a total of 60 of 159 invited clinician-scientists who received National Institutes of Health K08 or K23 awards between 2006 and 2009 and responded to a survey in 2021 agreed to participate. Invitees were selected using random, purposive sampling to support sample heterogeneity. Semistructured in-depth interviews were conducted January to May 2022. For this study, interviews from 31 women were analyzed using the framework approach to thematic analysis. Data analyses were performed between August and October 2023. Main Outcomes and Measures: Descriptive themes of participant experiences of gender and gender-based barriers in academic medicine. Results: A total of 31 women clinician-scientists (8 identifying as Asian [25.8%], 14 identifying as White [45.2%], and 9 identifying as members of a minority group underrepresented in medicine [29.0%]; 14 aged 40-49 years [45.2%] and 14 aged 50-59 years [45.2%]) were included. Among them, 17 participants (54.8%) had children who required adult supervision or care, 7 participants (22.6%) had children who did not require supervision or care, and 6 participants (19.4%) did not have children. There were 4 dominant themes identified within participant experiences in academic medicine: the mental burden of gendered expectations at work and home, inequitable treatment of women in bureaucratic processes, subtle and less subtle professional exclusion of women, and value of communities built on shared identities, experiences, and solidarity. Conclusions and Relevance: This study found that women perceived the institution of academic medicine as a male-centric system misaligned with the needs of women, with associated feelings of exclusion, disillusionment, and loss of trust in their institutions. Findings suggest that the confluence of domestic obligations and unaccommodating institutional environments may make it difficult for women clinician-scientists to achieve established timelines of career progression and productivity; these findings may have long-term implications for the well-being and retention of women in academic medicine.

The Disproportionate Effects of the COVID-19 Pandemic on the Time Allocation of Recipients of NIH Career Development Awards Who Are Women or Caregivers of Dependents.

PURPOSE: To understand time allocation of a national medical faculty cohort 1.5-2 years after the COVID-19 pandemic began, compared to before. METHOD: From August 2021-April 2022, the authors conducted a retrospective survey of 1,430 clinician-researchers who received National Institutes of Health career-development awards between 2006-2009 asking about domestic and professional time allocation pre-pandemic and at the time of surveys (TOS). Of 915 respondents (64%), the 830 who remained in academic positions constituted the analytic sample. Multivariable regression models identified demographic factors associated with each time outcome and change in time between pre-pandemic and TOS, and having experienced ≥8-hour increase of total self-reported weekly professional work hours and domestic labor hours. RESULTS: Median self-reported weekly professional work hours were 55 hours/week pre- pandemic and 60 at TOS. On multivariable analysis, significant predictors of self-reported weekly professional work hours at TOS were having a non-child other dependent (+2.6 hours, P = .03), academic rank (associate -3.1 hours, assistant -9.0 hours; P < .001), and specialty (P < .001). Average self-reported TOS weekly domestic-labor hours were 23.1 among men and 30.2 among women (P < .001). Predictors of total self-reported TOS weekly domestic hours were being a woman (+5.6 hours; P < .001) and having children requiring supervision (+10.2 hours; P < .001). Overall, 9.3% of men (42/450) and 21.6% of women (88/407) experienced a ≥ 8 hour increase in domestic labor (P < .001). On multivariable analysis, women had higher odds of substantial domestic-labor increase (OR = 2.33, 95% CI: 1.47, 3.68), as did those with children requiring supervision (OR = 1.93, 95% CI: 1.25, 2.98) or other dependents (OR = 1.83, 95% CI: 1.13, 2.98). CONCLUSIONS: This study illuminates demands on women and faculty with dependents during the COVID-19 pandemic and suggests increased flexibility and resources are of heightened importance.

What Do Psychiatrists Think About Caring for Patients Who Have Extremely Treatment-Refractory Illness?

Questions about when to limit unhelpful treatments are often raised in general medicine but are less commonly considered in psychiatry. Here we describe a survey of U.S. psychiatrists intended to characterize their attitudes about the management of suicidal ideation in patients with severely treatment-refractory illness. Respondents (n = 212) received one of two cases describing a patient with suicidal ideation due to either borderline personality disorder or major depressive disorder. Both patients were described as receiving all guideline-based and plausible emerging treatments. Respondents rated the expected helpfulness and likelihood of recommending each of four types of intervention: hospitalization, additional medication changes, additional neurostimulation, and additional psychotherapy. Across both cases, most respondents said they were likely to provide each intervention, except for additional neurostimulation in borderline personality disorder, while fewer thought each intervention would be helpful. Substantial minorities of respondents indicated that they would provide an intervention they did not think was likely to be helpful. Our results suggest that while most psychiatrists recognize the possibility that some patients are unlikely to be helped by available treatments, many would continue to offer such treatments.

Integrating Cost into Shared Decision-Making for Heart Failure with Reduced Ejection Fraction (POCKET-COST-HF): A Trial Providing Out-of-Pocket Costs for Heart Failure Medications during Clinical Encounters.

BACKGROUND: Evidence-based medical therapy for heart failure with reduced ejection fraction (HFrEF) often entails substantial out-of-pocket costs that can vary appreciably between patients. This has raised concerns regarding financial toxicity, equity, and adherence to medical therapy. In spite of these concerns, cost discussions in the HFrEF population appear to be rare, partly because out-of-pocket costs are generally unavailable during clinical encounters. In this trial, out-of-pocket cost information is given to patients and clinicians during outpatient encounters with the aim to assess the impact of providing this information on medication discussions and decisions. HYPOTHESIS: Cost-informed decision-making will be facilitated by providing access to patient-specific out-of-pocket cost estimates at the time of clinical encounter. DESIGN: Integrating Cost into Shared Decision-Making for Heart Failure with Reduced Ejection Fraction (POCKET-COST-HF) is a multicenter trial based at Emory Healthcare and University of Colorado Health. Adapting an existing patient activation tool from the EPIC-HF trial, patients and clinicians are presented a checklist with medications approved for treatment of HFrEF with or without patient-specific out-of-pocket costs (obtained from a financial navigation firm). Clinical encounters are audio-recorded, and patients are surveyed about their experience. The trial utilizes a stepped-wedge cluster randomized design, allowing for each site to enroll control and intervention group patients while minimizing contamination of the control arm. DISCUSSION: This trial will elucidate the potential impact of robust cost disclosure efforts and key information regarding patient and clinician perspectives related to cost and cost communication. It also will reveal important challenges associated with providing out-of-pocket costs for medications during clinical encounters. Acquiring medication costs for this trial requires an involved process and outsourcing of work. In addition, costs may change throughout the year, raising questions regarding what specific information is most valuable. These data will represent an important step towards understanding the role of integrating cost discussions into heart failure care. GOV IDENTIFIER: NCT04793880.

Cancer Treatment Decision-Making for People Living With HIV: Physician-Reported Barriers, Facilitators, and Recommendations.

BACKGROUND: Compared with the general cancer population, people living with HIV (PLWH) and cancer are less likely to receive treatment and have significantly elevated cancer-specific mortality for many common cancer types. Physician recommendations drive the cancer therapy that patients receive, yet there is limited information assessing how cancer treatment decisions are made for people living with HIV and cancer. We sought to understand oncologist decision-making in PLWH and cancer by eliciting barriers, facilitators, and recommendations for enhancing care delivery. SETTING: Participants were recruited between May 2019 and May 2021 from one academic medical center in the western United States (n = 13), another in the southeastern United States (n = 7), and community practices nationwide (n = 5). METHODS: Using an inductive qualitative approach, we conducted in-depth interviews with 25 oncologists from two academic medical centers and community practices. RESULTS: Facilitators of cancer care delivery included readily available information regarding HIV status and stage, interdepartmental communication, and antiviral therapy adherence. Barriers included a lack of formal education on HIV malignancies, perceptions of decreased life expectancy, fear of inadvertent disclosure, and drug-drug interactions. Recommendations included improved provider communication, patient social and mental health resources, and continuing education opportunities. CONCLUSION: The study revealed drivers of cancer treatment decision-making, highlighting physician-reported barriers and facilitators, and recommendations to support treatment decision-making. This is the first known study examining oncologists' perceptions of caring for PLWH. Given that cancer is a leading cause of death among PLWH, there is an urgent need to improve care and outcomes.

Prognostic Discordance Among Parents and Physicians Caring for Infants with Neurologic Conditions.

OBJECTIVE: To determine the frequency, degree, and nature of prognostic discordance between parents and physicians caring for infants with neurologic conditions. STUDY DESIGN: In this observational cohort study, we enrolled parents and physicians caring for infants with neurologic conditions in advance of a family conference. Parent-physician dyads completed a postconference survey targeting expected neurologic outcomes across 3 domains (motor, speech, and cognition) using a 6-point scale. Prognostic discordance was defined as a difference of ≥2 response options and was considered moderate (difference of 2-3 response options) or high (difference of 4-5 response options). Responses were categorized as differences in belief and/or differences in understanding using an existing paradigm. RESULTS: Forty parent-physician dyads of 28 infants completed surveys. Parent-physician discordance about prognosis occurred in ≥1 domain in the majority of dyads (n = 28/40, 70%). Discordance was generally moderate in degree (n = 23/28, 82%) and occurred with similar frequency across all domains. Of parent-physician dyads with discordance, the majority contained a difference in understanding in at least 1 domain (n = 25/28, 89%), while a minority contained a difference of belief (n = 6/28, 21%). When discordance was present, parents were typically more optimistic in their predictions compared with physicians (n = 25/28, 89%). CONCLUSIONS: Differing perceptions about the prognosis of critically ill infants are common and due to differences in both understanding and belief. These findings can be used to develop targeted interventions to improve prognostic communication.

Workplace Harassment, Cyber Incivility, and Climate in Academic Medicine.

Importance: The culture of academic medicine may foster mistreatment that disproportionately affects individuals who have been marginalized within a given society (minoritized groups) and compromises workforce vitality. Existing research has been limited by a lack of comprehensive, validated measures, low response rates, and narrow samples as well as comparisons limited to the binary gender categories of male or female assigned at birth (cisgender). Objective: To evaluate academic medical culture, faculty mental health, and their relationship. Design, Setting, and Participants: A total of 830 faculty members in the US received National Institutes of Health career development awards from 2006-2009, remained in academia, and responded to a 2021 survey that had a response rate of 64%. Experiences were compared by gender, race and ethnicity (using the categories of Asian, underrepresented in medicine [defined as race and ethnicity other than Asian or non-Hispanic White], and White), and lesbian, gay, bisexual, transgender, queer (LGBTQ+) status. Multivariable models were used to explore associations between experiences of culture (climate, sexual harassment, and cyber incivility) with mental health. Exposures: Minoritized identity based on gender, race and ethnicity, and LGBTQ+ status. Main Outcomes and Measures: Three aspects of culture were measured as the primary outcomes: organizational climate, sexual harassment, and cyber incivility using previously developed instruments. The 5-item Mental Health Inventory (scored from 0 to 100 points with higher values indicating better mental health) was used to evaluate the secondary outcome of mental health. Results: Of the 830 faculty members, there were 422 men, 385 women, 2 in nonbinary gender category, and 21 who did not identify gender; there were 169 Asian respondents, 66 respondents underrepresented in medicine, 572 White respondents, and 23 respondents who did not report their race and ethnicity; and there were 774 respondents who identified as cisgender and heterosexual, 31 as having LGBTQ+ status, and 25 who did not identify status. Women rated general climate (5-point scale) more negatively than men (mean, 3.68 [95% CI, 3.59-3.77] vs 3.96 [95% CI, 3.88-4.04], respectively, P < .001). Diversity climate ratings differed significantly by gender (mean, 3.72 [95% CI, 3.64-3.80] for women vs 4.16 [95% CI, 4.09-4.23] for men, P < .001) and by race and ethnicity (mean, 4.0 [95% CI, 3.88-4.12] for Asian respondents, 3.71 [95% CI, 3.50-3.92] for respondents underrepresented in medicine, and 3.96 [95% CI, 3.90-4.02] for White respondents, P = .04). Women were more likely than men to report experiencing gender harassment (sexist remarks and crude behaviors) (71.9% [95% CI, 67.1%-76.4%] vs 44.9% [95% CI, 40.1%-49.8%], respectively, P < .001). Respondents with LGBTQ+ status were more likely to report experiencing sexual harassment than cisgender and heterosexual respondents when using social media professionally (13.3% [95% CI, 1.7%-40.5%] vs 2.5% [95% CI, 1.2%-4.6%], respectively, P = .01). Each of the 3 aspects of culture and gender were significantly associated with the secondary outcome of mental health in the multivariable analysis. Conclusions and Relevance: High rates of sexual harassment, cyber incivility, and negative organizational climate exist in academic medicine, disproportionately affecting minoritized groups and affecting mental health. Ongoing efforts to transform culture are necessary.

Definitely, Maybe: Helping Patients Make Decisions about Surgery When Prognosis Is Uncertain.

AbstractThe sudden onset of severe traumatic brain injury (sTBI) is an event suffered by millions of individuals each year. Regardless of this frequency in occurrence, accurate prognostication remains difficult to achieve among physicians. There are many variables that affect this prognosis. Physicians are expected to assess the clinical indications of the brain injury while considering other factors such as patient quality of life, patient preferences, and environmental context. However, this lack of certainty in prognosis can ultimately affect treatment recommendations and prompt clinical ethical issues at the bedside, as it leaves room for physician bias and interpretation. In this article, we introduce data on neurosurgeon values that may shed light on the process physicians and patients involved in sTBI undergo. In doing so, we highlight the many nuances in decision-making for patients suffering from sTBI and discuss potential solutions to better patient-physician or surrogate-physician interactions.

Deciding Whether to Take Sacubitril/Valsartan: How Cardiologists and Patients Discuss Out-of-Pocket Costs.

Background Out-of-pocket costs have significant implications for patients with heart failure and should ideally be incorporated into shared decision-making for clinical care. High out-of-pocket cost is one potential reason for the slow uptake of newer guideline-directed medical therapies for heart failure with reduced ejection fraction. This study aims to characterize patient-cardiologist discussions involving out-of-pocket costs associated with sacubitril/valsartan during the early postapproval period. Methods and Results We conducted content analysis on 222 deidentified transcripts of audio-recorded outpatient encounters taking place between 2015 and 2018 in which cardiologists (n=16) and their patients discussed whether to initiate, continue, or discontinue sacubitril/valsartan. In the 222 included encounters, 100 (45%) contained discussions about cost. Cost was discussed in a variety of contexts: when sacubitril/valsartan was initiated, not initiated, continued, and discontinued. Of the 97 cost conversations analyzed, the majority involved isolated discussions about insurance coverage (64/97 encounters; 66%) and few addressed specific out-of-pocket costs or affordability (28/97 encounters; 29%). Discussion of free samples of sacubitril/valsartan was common (52/97 encounters; 54%), often with no discussion of a longer-term plan for addressing cost. Conclusions Although cost conversations were somewhat common in patient-cardiologist encounters in which sacubitril/valsartan was discussed, these conversations were generally superficial, rarely addressing affordability or cost-value judgments. Cardiologists frequently provided patients with a course of free sacubitril/valsartan samples without a plan to address the cost after the samples ran out.

Improving Cancer Care for People Living With HIV: A Qualitative Study of Provider Knowledge, Attitudes, and Practice.

PURPOSE: Cancer is now the leading cause of non-AIDS death in the US population with HIV. People living with HIV (PLWH) are known to have lower cancer treatment rates and worse cancer outcomes. Disparate cancer treatment is driven by health system, patient, and clinician factors. Little attention has been given to the factors oncologists consider when making cancer treatment recommendations to PLWH. This study sought to examine oncologists' knowledge, attitudes, and practices that influence cancer treatment decision-making. METHODS AND MATERIALS: This study used qualitative methods to explore oncologists' treatment decision-making processes for PLWH and cancer. The sample included 25 radiation, medical, and surgical oncologists from 2 academic centers and 5 community practices. The interview domains were developed from the Andersen Healthcare Utilization Model, the Health Belief Model, and the PEN-3 Model, as well as our prior survey research. RESULTS: This study describes elements of cancer treatment decision-making for PLWH. Oncologists highlighted the need for formal HIV education to support cancer treatment. One main concern with patient-provider interactions pertained to maintaining patient confidentiality during clinical encounters. Lastly, the importance of multidisciplinary care among health care providers allowed oncologists to facilitate both cancer care and logistical support. CONCLUSIONS: As cancer becomes an increasingly common cause of death among PLWH, it is critical to understand the drivers of the observed disparities in cancer treatment. To our knowledge, this is the first qualitative study to describe oncologists' knowledge, attitudes, and practices toward patients who have a comorbid diagnosis of HIV and cancer. Several themes for future interventions emerge, including HIV training for cancer care providers, fostering interdisciplinary collaboration, enhancing HIV education for oncology learners and clinicians, and minimizing implicit bias.

Modifying an Open Science Online Grocery for parents of youth with anorexia nervosa: A proof-of-concept study.

OBJECTIVE: For youth with anorexia nervosa (AN), remission requires high caloric goals to achieve weight restoration, consumption of a wide variety of calorically dense foods, and reintroduction of eliminated foods. Family-based treatment (FBT), the gold-standard treatment for youth with AN, empowers parents to renourish their child and restore them to health; yet, parents often report struggling with shifting meal planning and grocery shopping behaviors to focus on nutritional rehabilitation and weight restoration. METHODS: This proof-of-concept study aimed to modify a simulated grocery store (Open Science Online Grocery [OSOG]) for parents of youth with AN and explore the acceptability and feasibility of its use as part of standard care. Study staff collaborated with six parent research partners to modify the OSOG prior to piloting it with participants. Participants were 10 parents of youth undergoing a first-time hospitalization for medical stabilization of AN or atypical AN. Parents completed a battery of measures and a semistructured interview assessing the acceptability and feasibility of OSOG. RESULTS: Parents described the tool as credible and acceptable. Qualitative feedback highlighted common themes of caregiver burden, nutrition education, and acceptability of the tool. DISCUSSION: Results point to the need for more work in supporting parents in Phase I of FBT. PUBLIC SIGNIFICANCE: Families are instrumental in supporting youth to recover from anorexia nervosa. During treatment, parents are charged with selecting and serving their adolescent's meals, often requiring them to change grocery shopping and food preparation habits to meet their child's high caloric needs. Parents reported feeling overwhelmed by this task and noted struggling with learning different approaches to nourish their adolescent during an already stressful time. Collaboratively with parents, we modified a tool to support parents in shifting thier shopping habits, which they reported as being a helpful springboard in the early phase of treatment.

Medication Payments by Insurers and Patients for the Treatment of Metastatic Castrate-Resistant Prostate Cancer.

PURPOSE: The implications of high prices for cancer drugs on health care costs and patients' financial burdens are a growing concern. Patients with metastatic castrate-resistant prostate cancer (mCRPC) are often candidates for multiple first-line systemic therapies with similar impacts on life expectancy. However, little is known about the gross and out-of-pocket (OOP) payments associated with each of these drugs for patients with employer-sponsored health insurance. We therefore aimed to determine the gross and OOP payments of first-line drugs for mCRPC and how the payments vary across drugs. METHODS: This retrospective cohort study included 4,298 patients with prostate cancer who initiated therapy with one of six drugs approved for first-line treatment of mCRPC between July 1, 2013, and June 30, 2019. We compared gross and OOP payments during the 6 months after initiation of treatment for mCRPC using private payer claims data across patients using different first-line drugs. RESULTS: Gross payments varied across drugs. Over the 6 months after the index prescription, mean unadjusted gross drug payments were highest for patients receiving sipuleucel-T ($115,525 USD) and lowest for patients using docetaxel ($12,804 USD). OOP payments were lower than gross drug payments; mean 6-month OOP payments were highest for cabazitaxel ($1,044 USD) and lowest for docetaxel ($296 USD). There was a wide distribution of OOP payments within drug types. CONCLUSION: Drugs for mCRPC are expensive with large differences in payments by drug type. OOP payments among patients with employer-sponsored health insurance are much lower than gross drug payments, and they vary both across and within first-line drug types, with some patients making very high OOP payments. Although lowering drug prices would reduce pharmaceutical spending for patients with mCRPC, decreasing patient financial burden requires understanding an individual patient's benefit design.

Patient-Reported Outcomes of Breast Reconstruction: Does the Quality of Decisions Matter?

BACKGROUND: Little is known about how the quality of decisions influences patient-reported outcomes (PROs). We hypothesized that higher decision quality for breast reconstruction would be independently associated with better PROs. METHODS: We conducted a prospective cohort study of patients undergoing mastectomy with or without reconstruction. Patients were enrolled before surgery and followed for 18 months. We used BREAST-Q scales to measure PROs and linear regression models to explore the relationship between decision quality (based on knowledge and preference concordance) and PROs. Final models were adjusted for baseline BREAST-Q score, radiation, chemotherapy, and major complications. RESULTS: The cohort included 101 patients who completed baseline and 18-month surveys. Breast reconstruction was independently associated with higher satisfaction with breasts (ß = 20.2, p = 0.0002), psychosocial well-being (ß = 14.4, p = 0.006), and sexual well-being (ß = 15.7, p = 0.007), but not physical well-being. Patients who made a high-quality decision had similar PROs as patients who did not. Among patients undergoing mastectomy with reconstruction, higher decision quality was associated with lower psychosocial well-being (ß = -14.2, p = 0.01). CONCLUSIONS: Breast reconstruction was associated with better PROs in some but not all domains. Overall, making a high-quality decision was not associated with better PROs. However, patients who did not have reconstruction had a trend toward better well-being after making a high-quality decision, whereas patients who did have reconstruction had poorer well-being after making a high-quality decision. Additional research on the relationship between decision quality and PROs is needed.

The ALIGN Framework: A Parent-Informed Approach to Prognostic Communication for Infants With Neurologic Conditions.

BACKGROUND AND OBJECTIVES: Clinicians often communicate complex, uncertain, and distressing information about neurologic prognosis to parents of critically ill infants. Although communication tools have been developed in other disciplines and settings, none address the unique needs of the neonatal and pediatric neurology context. We aimed to develop a parent-informed framework to guide clinicians in communicating information about neurologic prognosis. METHODS: Parents of infants with neurologic conditions in the intensive care unit were enrolled in a longitudinal study of shared decision-making from 2018 to 2020. Parents completed semistructured interviews following recorded family meetings with the health care team, at hospital discharge, and 6 months after discharge. All interviews targeted information about parent preferences for prognostic disclosure. We analyzed the data using a conventional content analysis approach. Two study team members independently coded all interview transcripts, and discrepancies were resolved in consensus. We used NVIVO 12 qualitative software to index and organize codes. RESULTS: Fifty-two parents of 37 infants completed 123 interviews. Parents were predominantly mothers (n = 37/52, 71%) with a median age of 31 (range 19-46) years. Half were Black (n = 26/52, 50%), and a minority reported Hispanic ethnicity (n = 2/52, 4%). Inductive analysis resulted in the emergence of 5 phases of prognostic communication (Approach, Learn, Inform, Give support, and Next steps: ALIGN): (1) Approach: parents appreciated receiving consistent information about their child's neurologic outcome from clinicians who knew their child well. (2) Learn: parents valued when clinicians asked them how they preferred receiving information and what they already knew about their child's outcome prior to information delivery. (3) Inform: parents valued honest, thorough, and balanced information that disclosed prognostic uncertainty and acknowledged room for hope. (4) Give support: parents valued empathic communication and appreciated clinicians who offered real-time emotional support. (5) Next steps: parents appreciated clinicians who connected them to resources, including peer support. DISCUSSION: The ALIGN framework offers a novel, parent-informed strategy to effectively communicate neurologic prognosis. Although ALIGN represents key elements of a conversation about prognosis, each clinician can adapt this framework to their own approach. Future work will assess the effectiveness of this framework on communication quality and prognostic understanding.

Characterizing the Language Used to Discuss Death in Family Meetings for Critically Ill Infants.

Importance: Communication during conversations about death is critical; however, little is known about the language clinicians and families use to discuss death. Objective: To characterize (1) the way death is discussed in family meetings between parents of critically ill infants and the clinical team and (2) how discussion of death differs between clinicians and family members. Design, Setting, and Participants: This longitudinal qualitative study took place at a single academic hospital in the southeast US. Patients were enrolled from September 2018 to September 2020, and infants were followed up longitudinally throughout their hospitalization. Participants included families of infants with neurologic conditions who were hospitalized in the intensive care unit and had a planned family meeting to discuss neurologic prognosis or starting, not starting, or discontinuing life-sustaining treatment. Family meetings were recorded, transcribed, and deidentified before being screened for discussion of death. Main Outcomes and Measures: The main outcome was the language used to reference death during family meetings between parents and clinicians. Conventional content analysis was used to analyze data. Results: A total of 68 family meetings involving 36 parents of 24 infants were screened; 33 family meetings (49%) involving 20 parents (56%) and 13 infants (54%) included discussion of death. Most parents involved in discussion of death identified as the infant's mother (13 [65%]) and as Black (12 [60%]). Death was referenced 406 times throughout the family meetings (275 times by clinicians and 131 times by family members); the words die, death, dying, or stillborn were used 5% of the time by clinicians (13 of 275 references) and 15% of the time by family members (19 of 131 references). Four types of euphemisms used in place of die, death, dying, or stillborn were identified: (1) survival framing (eg, not live), (2) colloquialisms (eg, pass away), (3) medical jargon, including obscure technical terms (eg, code event) or talking around death with physiologic terms (eg, irrecoverable heart rate drop), and (4) pronouns without an antecedent (eg, it). The most common type of euphemism used by clinicians was medical jargon (118 of 275 references [43%]). The most common type of euphemism used by family members was colloquialism (44 of 131 references [34%]). Conclusions and Relevance: In this qualitative study, the words die, death, dying, or stillborn were rarely used to refer to death in family meetings with clinicians. Families most often used colloquialisms to reference death, and clinicians most often used medical jargon. Future work should evaluate the effects of euphemisms on mutual understanding, shared decision-making, and clinician-family relationships.

Attitudes and Beliefs of Patients With Left-Ventricular Assist Devices Toward COVID-19 Vaccination and Willingness to Seek Care During the Pandemic.

Given the stalling improvement in vaccine hesitancy rates in the United States (US), it is important to understand why a chronically ill group, patients with left-ventricular assist devices (LVADs), might not get vaccinated and to delineate the barriers they may face in seeking care. We conducted an online survey to characterize the attitudes of patients with LVADs toward COVID-19 vaccination, identify their willingness to seek care during the pandemic, and characterize barriers to doing so. Our survey showed that the rate of vaccine hesitancy among LVAD patients is similar to that of the general population in the US. This rate is higher than expected for a chronically ill group at risk of severe COVID-19 infection. We also found that LVAD patients perceive barriers to seeking care during the pandemic. We recommend that LVAD care teams emphasize that patients should seek care for emergency medical conditions despite their fears of contracting COVID-19. Based on our results, we also recommend vaccine uptake education for this population focused on patients' concerns about serious side effects and not enough research done on the vaccine.

Prognostic Discussion for Infants with Neurologic Conditions: Qualitative Analysis of Family Conferences.

OBJECTIVE: We characterize the content and role of prognostic discussion for infants with neurologic conditions. METHODS: In this descriptive qualitative study, we prospectively enrolled infants (age < 1 year) in the intensive care unit with a neurologic condition anticipated to have ≥1 family conference about prognosis or goals of care. We audiorecorded family conferences as they occurred. We used a rapid-cycle qualitative approach to identify and refine themes. RESULTS: Forty infants and 61 parents were enrolled; 68 family conferences occurred for 24 infants. The majority of infant cases (n = 23/24, 96%) and conferences (n = 64/68, 94%) included discussion of neurologic prognosis. Common infant diagnoses included prematurity (n = 12, 52%), genetic conditions (n = 9, 35%), and brain malformations (n = 7, 30%). We identified 2 themes relating to the characterization of the infant's prognosis: (1) predictions of impairment and (2) rationale for prognostic predictions. We identified 3 themes characterizing the role of prognostic discussion: (1) aligning parent and clinician understanding of infant outcome, (2) influencing decision-making, and (3) preparing for life at home. We identified 2 themes characterizing discussion of prognostic uncertainty: (1) multilayered types of uncertainty and (2) holding space for hope alongside uncertainty. INTERPRETATION: In this cohort of infants with neurologic conditions and their parents, we identified salient themes characterizing the content and role of discussion about neurologic outcome. Our findings highlight that prognostic discussion focuses on anticipated impairments, informs decision-making, and helps families prepare for home life. Future work should characterize whether these findings align with parent preferences for prognostic disclosure. ANN NEUROL 2022;92:699-709.