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BackgroundRacism significantly contributes to inequitable care quality and outcomes for people of color with serious illness, their families, and their communities. Clinicians use serious illness communication (SIC) to foster trust, elicit patients’ needs and values, and deliver goal-concordant services. Current SIC tools do not actively guide users to incorporate patients’ experiences with racism into care.Objectives1) To explicitly address racism during SIC in the context of the patient’s lived experience and 2) to provide race-conscious SIC recommendations for clinicians and researchers.MethodsApplying the conceptual elements of Public Health Critical Race Praxis to SIC practice and research through reflection on inclusive SIC approaches and a composite case.ResultsPatients’ historical and ongoing narratives of racism must be intentionally welcomed in physically and psychologically safe environments by leveraging empathic communication opportunities, forging antiracist palliative care practices, removing interpersonal barriers to promote transparent patient–clinician relationships, and strengthening organizational commitments to strategically dismantle racism. Race-conscious SIC communication strategies, skills, and examples of talking points are provided.DiscussionRace-conscious SIC practices may assist to acknowledge racial dynamics within the patient–clinician encounter. Furthermore, race-conscious SIC may help to mitigate implicit and explicit bias in clinical practices and the exclusionary research cultures that guide them.

Physicians who specialize in pulmonary arterial hypertension (PAH) care for patients facing a serious, life-limiting illness. Palliative care is underutilized in patients with PAH, and little is known about how best to provide palliative care to this patient population.Using a qualitative approach, assess physicians' perspectives on barriers and facilitators to the use of palliative care in PAH.Participants were board-certified pulmonologists and cardiologists recruited from the Pulmonary Hypertension Association's list of physician specialists and academic center websites. We performed one-on-one semi-structured interviews that were recorded, transcribed, and analyzed using thematic analysis.Twelve physicians participated in the study, with a median age of 48.5 years and 20.5 years of clinical experience caring for patients with PAH. We identified the following themes and associated barriers and facilitators to effective implementation of palliative care for patients with PAH: a tailored approach to the individual patient; a PAH-specialist-led culture of care; effective collaboration with palliative care clinicians; and limitations imposed by health systems.PAH physicians are open to palliative care for their patients and are willing to partner with palliative care clinicians to implement this effectively and in the right setting. Areas for targeted improvement in enhancing palliative care for patients with PAH exist, especially enhancing collaboration between PAH physicians and palliative care specialists and navigating barriers in health systems.

© 2022 American Academy of Hospice and Palliative MedicineContext: The COVID-19 pandemic has highlighted variability in intensity of care. We aimed to characterize intensity of care among hospitalized patients with COVID-19. Objectives: Examine the prevalence and predictors of admission code status, palliative care consultation, comfort-measures-only orders, and cardiopulmonary resuscitation (CPR) among patients hospitalized with COVID-19. Methods: This cross-sectional study examined data from an international registry of hospitalized patients with COVID-19. A proportional odds model evaluated predictors of more aggressive code status (i.e., Full Code) vs. less (i.e., Do Not Resuscitate, DNR). Among decedents, logistic regression was used to identify predictors of palliative care consultation, comfort measures only, and CPR at time of death. Results: We included 29,923 patients across 179 sites. Among those with admission code status documented, Full Code was selected by 90% (n = 15,273). Adjusting for site, Full Code was more likely for patients who were of Black or Asian race (ORs 1.82, 95% CIs 1.5–2.19; 1.78, 1.15–3.09 respectively, relative to White race), Hispanic ethnicity (OR 1.89, CI 1.35–2.32), and male sex (OR 1.16, CI 1.0–1.33). Of the 4951 decedents, 29% received palliative care consultation, 59% transitioned to comfort measures only, and 29% received CPR, with non-White racial and ethnic groups less likely to receive comfort measures only and more likely to receive CPR. Conclusion: In this international cohort of patients with COVID-19, Full Code was the initial code status in the majority, and more likely among patients who were Black or Asian race, Hispanic ethnicity or male. These results provide direction for future studies to improve these disparities in care.

Seriously ill patients whose prioritized healthcare goals are understood by their clinicians are likely better positioned to receive goal-concordant care.To examine the proportion of seriously ill patients whose prioritized healthcare goal is accurately perceived by their clinician and identify factors associated with accurate perception.Secondary analysis of a multicenter cluster-randomized trial of outpatients with serious illness and their clinicians. Approximately two weeks after a clinic visit, patients reported their current prioritized healthcare goal- extending life over relief of pain and discomfort, or relief of pain and discomfort over extending life - and clinicians reported their perception of their patients' current prioritized healthcare goal; matching these items defined accurate perception.Of 252 patients with a prioritized healthcare goal, 60% had their goal accurately perceived by their clinician, 27% were cared for by clinicians who perceived prioritization of the alternative goal, and 13% had their clinician answer unsure. Patients who were older (OR 1.03 per year; 95%CI 1.01, 1.05), had stable goals (OR 2.52; 95%CI 1.26, 5.05), and had a recent goals-of-care discussion (OR 1.78, 95%CI 1.00, 3.16) were more likely to have their goals accurately perceived.A majority of seriously ill outpatients are cared for by clinicians who accurately perceive their patients' prioritized healthcare goals. However, a substantial portion are not and may be at higher risk for goal-discordant care. Interventions that facilitate goals-of-care discussions may help align care with goals, as recent discussions were associated with accurate perceptions of patients' prioritized goals.

ImportanceDiscussions about goals of care are important for high-quality palliative care yet are often lacking for hospitalized older patients with serious illness.ObjectiveTo evaluate a communication-priming intervention to promote goals-of-care discussions between clinicians and hospitalized older patients with serious illness.Design, Setting, and ParticipantsA pragmatic, randomized clinical trial of a clinician-facing communication-priming intervention vs usual care was conducted at 3 US hospitals within 1 health care system, including a university, county, and community hospital. Eligible hospitalized patients were aged 55 years or older with any of the chronic illnesses used by the Dartmouth Atlas project to study end-of-life care or were aged 80 years or older. Patients with documented goals-of-care discussions or a palliative care consultation between hospital admission and eligibility screening were excluded. Randomization occurred between April 2020 and March 2021 and was stratified by study site and history of dementia.InterventionPhysicians and advance practice clinicians who were treating the patients randomized to the intervention received a 1-page, patient-specific intervention (Jumpstart Guide) to prompt and guide goals-of-care discussions.Main Outcomes and MeasuresThe primary outcome was the proportion of patients with electronic health record–documented goals-of-care discussions within 30 days. There was also an evaluation of whether the effect of the intervention varied by age, sex, history of dementia, minoritized race or ethnicity, or study site.ResultsOf 3918 patients screened, 2512 were enrolled (mean age, 71.7 [SD, 10.8] years and 42% were women) and randomized (1255 to the intervention group and 1257 to the usual care group). The patients were American Indian or Alaska Native (1.8%), Asian (12%), Black (13%), Hispanic (6%), Native Hawaiian or Pacific Islander (0.5%), non-Hispanic (93%), and White (70%). The proportion of patients with electronic health record–documented goals-of-care discussions within 30 days was 34.5% (433 of 1255 patients) in the intervention group vs 30.4% (382 of 1257 patients) in the usual care group (hospital- and dementia-adjusted difference, 4.1% [95% CI, 0.4% to 7.8%]). The analyses of the treatment effect modifiers suggested that the intervention had a larger effect size among patients with minoritized race or ethnicity. Among 803 patients with minoritized race or ethnicity, the hospital- and dementia-adjusted proportion with goals-of-care discussions was 10.2% (95% CI, 4.0% to 16.5%) higher in the intervention group than in the usual care group. Among 1641 non-Hispanic White patients, the adjusted proportion with goals-of-care discussions was 1.6% (95% CI, −3.0% to 6.2%) higher in the intervention group than in the usual care group. There was no evidence of differential treatment effects of the intervention on the primary outcome by age, sex, history of dementia, or study site.Conclusions and RelevanceAmong hospitalized older adults with serious illness, a pragmatic clinician-facing communication-priming intervention significantly improved documentation of goals-of-care discussions in the electronic health record, with a greater effect size in racially or ethnically minoritized patients.Trial RegistrationClinicalTrials.gov Identifier: NCT04281784

CONTEXT: Documented goals-of-care discussions are an important quality metric for patients with serious illness. Natural language processing (NLP) is a promising approach for identifying goals-of-care discussions in the electronic health record (EHR). OBJECTIVES: To compare three NLP modeling approaches for identifying EHR documentation of goals-of-care discussions and generate hypotheses about differences in performance. METHODS: We conducted a mixed-methods study to evaluate performance and misclassification for three NLP featurization approaches modeled with regularized logistic regression: bag-of-words (BOW), rule-based, and a hybrid approach. From a prospective cohort of 150 patients hospitalized with serious illness over 2018–2020, we collected 4,391 inpatient EHR notes; 99 (2.3%) contained documented goals-of-care discussions. We used leave-one-out cross-validation to estimate performance by comparing pooled NLP predictions to human abstractors with receiver-operating-characteristic (ROC) and precision-recall (PR) analyses. We qualitatively examined a purposive sample of 70 NLP-misclassified notes using content analysis to identify linguistic features that allowed us to generate hypotheses underpinning misclassification. RESULTS: All three modeling approaches discriminated between notes with and without goals-of-care discussions (AUC(ROC): BOW, 0.907; rule-based, 0.948; hybrid, 0.965). Precision and recall were only moderate (precision at 70% recall: BOW, 16.2%; rule-based, 50.4%; hybrid, 49.3%; AUC(PR): BOW, 0.505; rule-based, 0.579; hybrid, 0.599). Qualitative analysis revealed patterns underlying performance differences between BOW and rule-based approaches. CONCLUSION: NLP holds promise for identifying EHR-documented goals-of-care discussions. However, the rarity of goals-of-care content in EHR data limits performance. Our findings highlight opportunities to optimize NLP modeling approaches, and support further exploration of different NLP approaches to identify goals-of-care discussions.

Racial inequities in palliative and end-of-life care have been well-documented for many years. This inequity is long-standing and resistant to many intervention efforts. One reason for this may be that research in racial inequity in palliative care, and the interventions developed, do not account for the effects of race and the everyday racism that patients of color experience while navigating the healthcare system. Public Health Critical Race Praxis (PHCRP) offers researchers new routes of inquiry to broaden the scope of research priorities in palliative care and improving racial outcomes through a novel conceptual framework and methodology. PHCRP, based off critical race theory (CRT), contains ten principles within four foci to guide researchers toward a more race conscious approach for the generation of research questions, research processes, and development of interventions targeting racial inequities.

CONTEXT: Patients with underlying chronic illness requiring mechanical ventilation for acute respiratory failure are at risk for poor outcomes and high costs. OBJECTIVES: Identify characteristics at time of intensive care unit (ICU) admission that identify patients at highest risk for high-intensity, costly care. METHODS: Retrospective cohort study using electronic health and financial records (2011–2017) for patients requiring ≥48 hours of mechanical ventilation with ≥1 underlying chronic condition at an academic healthcare system. Main outcome was total cost of index hospitalization. Exposures of interest included number and type of chronic conditions. We used finite mixture models to identify the highest-cost group. RESULTS: 4,892 patients met study criteria. Median cost for index hospitalization was $135,238 (range, $9,748-$3,176,065). Finite mixture modelling identified three classes with mean costs of $89,980, $150,603, and $277,712. Patients more likely to be in the high-cost class were: 1) < 72 years old (OR: 2.03; 95% CI:1.63, 2.52); 2) with dementia (OR: 1.55; 95% CI:1.17, 2.06) or chronic renal failure (OR: 1.27; 95% CI:1.08, 1.48); 3) weight loss ≥ 5% in year prior to hospital admission (OR: 1.25; 95% CI:1.05, 1.48); and 4) hospitalized during prior year (OR: 1.92; 95% CI:1.58, 2.35). CONCLUSION: Among patients with underlying chronic illness and acute respiratory failure, we identified characteristics associated with the highest costs of care. Identifying these patients may be of interest to healthcare systems and hospitals and serve as one indication to invest resources in palliative and supportive care programs that ensure this care is consistent with patients’ goals.

Rationale Intensive care unit (ICU) visitation restrictions during the COVID-19 pandemic have drastically reduced family-engaged care. Understanding the impact of physical distancing on family members of ICU patients is needed to inform future policies. Objective To understand the experiences of family members of critically ill patients with COVID-19 when physically distanced from their loved ones and to explore ways clinicians may support them. Methods This qualitative study of an observational cohort study reports data from 74 family members of ICU patients with COVID-19 at ten US hospitals in four states, chosen based on geographic and demographic diversity. Adult family members of patients admitted to the ICU with COVID-19 during the early phase of the pandemic (February-June 2020) were invited to participate in a phone interview. Interviews followed a semi-structured guide to assess four constructs: illness narrative, stress experiences, communication experiences, and satisfaction with care. Interviews were transcribed verbatim and analyzed using an inductive approach to thematic analysis. Results Among 74 interviewees, the mean age was 53.0 years; 55% were white, and 76% were female. Physical distancing contributed to substantial stress and harms (nine themes). Participants described profound suffering and psychological illness, unfavorable perceptions of care, and weakened therapeutic relationship between family members and clinicians. Three communication principles emerged as those most valued by family members: contact, consistency, and compassion (the 3Cs). Family members offered suggestions to guide clinicians faced with communicating with physically distanced families. Conclusions Visitation restrictions impose substantial psychological harms upon family members of critically ill patients. Derived from the voices of family members, our findings warrant strong consideration when implementing visitation restrictions in the ICU and advocate for investment in infrastructure (including staffing and videoconferencing) to support communication. This study offers family-derived recommendations to operationalize the 3Cs to guide and improve communication in times of physical distancing during the COVID-19 pandemic and beyond.

OBJECTIVES. To identify the prevalence of screening criteria for acute and post-traumatic stress disorders, and stress symptoms among family members of children in the pediatric intensive care unit (PICU) for more than 8 days and examine risk factors for stress symptoms. DESIGN. Secondary analysis of data from the Family Communication Study, a randomized trial of a palliative care intervention conducted between 2010 and 2014. The sample included 377 family members of 220 children. Outcomes were symptom scores and diagnostic screening criteria for Acute Stress Disorder (ASD) and Post-Traumatic Stress Disorder (PTSD). Predictors included demographic and admission related characteristics, and hypothesized risk factors for developing stress-related mental health disorders. SETTING. An urban pediatric hospital in Seattle, WA. MEASUREMENTS AND MAIN RESULTS. The mean score for acute stress symptoms during the ICU stay was 40.3 (sd = 13.8) and 59 family members in total met diagnostic screening criteria for ASD during hospitalization (15.6%). At 3-month follow-up, the mean score for posttraumatic stress symptoms was 30.8 (sd = 12.9) and 52 family members met diagnostic criteria for PTSD (13.8%). Factors associated with meeting ASD screening criteria were unplanned admission and poorer family relationships. Factors associated with PTSD symptoms and diagnosis were longer length of stay, meeting ASD criteria during admission, child’s death, and less perceived social support. CONCLUSIONS. Meeting screening criteria for PTSD was associated with demographic, length of stay and family relationships among family members of seriously ill children. PTSD outcomes were higher among family members whose child died. This study helps identify risk factors that can be used to target needed psychosocial screening, monitoring and support during and following a prolonged PICU admission, as well as family-centered interventions and supportive bereavement intervention for the family members of a deceased child.

Context Human-centered design provides a framework to understand the needs of patients and clinicians who are the target of goals-of-care discussion priming tools. Few studies employ human-centered design to develop and refine their tools. Objectives To describe how human-centered design can be applied to the development and refinement of clinician- and patient-facing inpatient goals-of-care discussion guides (Jumpstart guides). Methods Human-centered design was applied to the development and refinement of the inpatient Jumpstart guides in four phases: (1) discovering problems based on prior pilots, studies, and research team priorities; (2) further defining problems based on stakeholder and expert review of the current guides; (3) designing solutions based on consensus among stakeholders; and (4) validating solutions after research team review of stakeholder comments. Results Five initial problems were identified by the research team in phase 1. After expert and stakeholder review in phase 2, 30 additional problems were identified related to Jumpstart guide format, structure, and content. In phase 3, stakeholders proposed solutions to these 35 problems and reached consensus on 32 of these. There was disagreement in 3 areas, including how to frame discussions around cardiopulmonary resuscitation and 2 perceived barriers to inpatient goals-of-care discussions. In phase 4, the research team reviewed all stakeholder input and reached final consensus on solutions to all of the identified problems. Conclusion Human-centered design is a useful tool for enhancing communication interventions in serious illness and can easily be integrated in future development and refinement of clinician- and patient-facing interventions to enhance goals-of-care discussions.

BACKGROUND AND OBJECTIVES: People receiving maintenance dialysis must often rely on family members and other close persons to make critical treatment decisions toward the end of life. Contemporary data on family members’ understanding of the end-of-life wishes of members of this population are lacking. DESIGN, SETTING, PARTICIPANTS, & MEASUREMENTS: Among 172 family members of people undergoing maintenance dialysis, we ascertained their level of involvement in the patient’s care and prior discussions about care preferences. We also compared patient and family member responses to questions about end-of-life care using percentage agreement and the κ-statistic. RESULTS: The mean (SD) age of the 172 enrolled family members was 55 (±17) years, 136 (79%) were women, and 43 (25%) were Black individuals. Sixty-seven (39%) family members were spouses or partners of enrolled patients. A total of 137 (80%) family members had spoken with the patient about whom they would want to make medical decisions, 108 (63%) had spoken with the patient about their treatment preferences, 47 (27%) had spoken with the patient about stopping dialysis, and 56 (33%) had spoken with the patient about hospice. Agreement between patient and family member responses was highest for the question about whether the patient would want cardiopulmonary resuscitation (percentage agreement 83%, κ=0.31), and was substantially lower for questions about a range of other aspects of end-of-life care, including preference for mechanical ventilation (62%, 0.21), values around life prolongation versus comfort (45%, 0.13), preferred place of death (58%, 0.07), preferred decisional role (54%, 0.15), and prognostic expectations (38%, 0.15). CONCLUSIONS: Most surveyed family members reported they had spoken with the patient about their end-of-life preferences but not about stopping dialysis or hospice. Although family members had a fair understanding of patients’ cardiopulmonary resuscitation preferences, most lacked a detailed understanding of their perspectives on other aspects of end-of-life care.

Family members of critically ill patients with COVID-19 have described increased symptoms of Post-Traumatic Stress Disorder (PTSD). Little is known about how these symptoms may change over time.We studied changes in PTSD symptoms in family members of critically ill patients with COVID-19 over 12-months.This prospective, multi-site observational cohort study recruited participants at 12 hospitals in 5 states. Calls were made to participants at 3-4 months, 6-months, and 12-months post-patient admission to the ICU.There were 955 eligible family members, of whom 330 (53.3% of those reached) consented to participate. Complete longitudinal data was acquired for 115 individuals (34.8% of consented). PTSD symptoms were measured by the Impact of Events Scale-6 (IES-6), with a score of ≥10 identifying significant symptoms. At 3-months, the mean IES-6 score was 11.9±6.1 with 63.6% having significant symptoms, decreasing to 32.9% at one year (mean IES-6 score 7.6±5.0). Three clusters of symptom evolution emerged over time: persistent symptoms (34.8%, n=40), recovered symptoms (33.0%, n=38) and non-development of symptoms (32.2%, n=37). While participants identifying as Hispanic demonstrated initially higher adjusted IES-6 scores (2.57 points higher [95% CI: 1.1, 4.1, p =0.001]), they also demonstrated a more dramatic improvement in adjusted scores over time (4.7 greater decrease at 12 months [95% CI: 3.2-6.3, p.001]).One year later, some family members of patients with COVID-19 continue to experience significant symptoms of PTSD. Further studies are needed to better understand how various differences contribute to increased risk for these symptoms.

The integration of palliative care into intensive care units (ICUs) is advocated to mitigate physical and psychological burdens for patients and their families, and to improve end-of-life care. The most efficacious palliative care interventions, the optimal model of their delivery and the most appropriate outcome measures in ICU are not clear. We conducted a systematic review of randomised clinical trials and observational studies to evaluate the number and types of palliative care interventions implemented within the ICU setting, to assess their impact on ICU practice and to evaluate differences in palliative care approaches across different countries. Fifty-eight full articles were identified, including 9 randomised trials and 49 cohort studies; all but 4 were conducted within North America. Interventions were categorised into five themes: communication (14, 24.6%), ethics consultations (5, 8.8%), educational (18, 31.6%), involvement of a palliative care team (28, 49.1%) and advance care planning or goals-of-care discussions (7, 12.3%). Thirty studies (51.7%) proposed an integrative model, whilst 28 (48.3%) reported a consultative one. The most frequently reported outcomes were ICU or hospital length of stay (33/55, 60%), limitation of life-sustaining treatment decisions (22/55, 40%) and mortality (15/55, 27.2%). Quantitative assessment of pooled data was not performed due to heterogeneity in interventions and outcomes between studies. Beneficial effects on the most common outcomes were associated with strategies to enhance palliative care involvement, either with an integrative or a consultative approach. Few studies reported functional outcomes for ICU patients. Almost all studies were from North America, limiting the generalisability to other healthcare systems.

BACKGROUND: Parents experience high distress following their child's diagnosis of cancer. We previously tested two delivery models (group and one-on-one) of the “Promoting Resilience in Stress Management for Parents” (PRISM-P) intervention in a randomized trial: one-on-one delivery improved resilience and benefit finding at three months when compared to usual care (UC). OBJECTIVE: The objective of this analysis was to evaluate quantitative and qualitative outcomes at six months. DESIGN: In this single-center, phase 2, parallel, 1:1:1 randomized trial conducted December 2016 to December 2018, English-speaking parents with a 2–24 year-old child diagnosed with new cancer were randomly assigned to UC, one-on-one, or group PRISM-P, a brief, skill-based curriculum targeting stress management, goal setting, cognitive reframing, and meaning making. We collected parent-reported outcomes (resilience, benefit finding, and psychological distress) at baseline and three and six months. We applied linear mixed-effects regression models to examine six-month outcomes among all participants and conducted directed content analyses of exit interviews with the first 12 parents to complete each study arm. RESULTS: The 94 participating parents were median aged 35–38 years and predominantly white, college-educated mothers. At six months, there was no statistically significant difference in parent-reported outcomes. Exit interviews (n = 36) suggested that PRISM-P was highly valued: 100% of interviewed recipients recommended it for other parents. Most suggested more coaching would help them retain skills, and almost all endorsed a combined one-on-one and group program. CONCLUSIONS: Although the PRISM-P benefits observed at three months were not sustained for six months, all interviewed parents found it valuable. Additional opportunities to strengthen and sustain resilience resources include longer follow-up, flexible format, and skill reinforcement. TRIAL REGISTRATION: NCT02998086.

Purpose: Although targeted psychosocial programming for adolescents and young adults (AYAs) with advanced cancer is a well-described priority, how best to engage AYAs in that programming is less clear. We aimed to examine AYA perspectives on facilitators and barriers to utilization of psychosocial programs and preferred mode of delivery. Methods: In this nested cohort study, AYAs participated in semistructured 1:1 interviews on communication needs. The present analysis focused on questions regarding psychosocial program delivery. Data were analyzed using directed content analysis followed by thematic content analysis to further organize and refine identified global themes and organizational themes. Results: We interviewed 32 patients (M(age) = 18, range 14–25, 41% female). Key facilitators to utilization of psychosocial services by AYAs were to (1) align in importance of coping skills, (2) emphasize AYA self-motivation and agency in approach and introduction to services, and (3) offer services to everyone and at multiple timepoints. Key AYA barriers included (1) considering themselves an exception to the rule when discussing the psychosocial needs of AYAs with cancer, (2) the challenge of starting something new, and (3) reluctance to share emotional problems with psychosocial clinicians. Regarding the mode of delivery, some preferred in-person delivery due to opportunities for developing a close relationship and therapeutic rapport-building. Mobile app-based delivery was universally appealing. Conclusion: We provide a potential framework to increase uptake of psychosocial services in the high needs population of AYAs with advanced cancer. Future research will explore implementation strategies for increasing AYA engagement in psychosocial intervention programs.

Although trust is central to successful clinician-family relationships in intensive care units (ICUs), little is known about how to promote surrogates' trust of ICU clinicians in this setting.Does the conduct of family conferences and clinicians' use of shared decision-making (SDM) within family conferences impact surrogates' trust in the clinician?Mixed methods secondary analysis of a multi-center prospective cohort study of 369 surrogate decision-makers of 204 decisionally incapacitated patients at high risk of death or severe functional impairment within 13 ICUs at 6 U.S. medical centers between 2008 and 2012. Surrogates completed the Abbreviated Wake Forest Physician Trust Scale (range 5-25) before and after an audio-recorded family conference conducted within 5 days of ICU admission. We qualitatively coded transcribed conferences to determine clinicians' use of 5 SDM behaviors: discussing surrogate's role, explaining medical condition and prognosis, providing emotional support, assessing understanding, and eliciting patient's values and preferences. Using multivariable linear regression with adjustment for clustering, we assessed whether surrogates' trust in the physician increased after the family meeting; we also examined whether the number of SDM behaviors used by clinicians during the family meeting impacted trust scores.In adjusted models, conduct of a family meeting was associated with increased trust (average change pre-to-post: 0.91-points (95% CI 0.4-1.4, P-value0.01)). Every additional element of SDM used during the family meeting, including discussing surrogate's role, providing emotional support, assessing understanding, and eliciting patient's values and preferences, was associated with a 0.37-point increase in trust (95% CI 0.08-0.67, P-value=0.01). If all 4 elements were used trust increased by 1.48-points. Explaining medical condition or prognosis was observed in nearly every conference (98.5%) and excluded from the final model.The conduct of family meetings and clinicians' use of SDM behaviors during meetings were both associated with increases in surrogates' trust in the treating clinician.

Goals-of-care discussions are important for patient-centered care among hospitalized patients with serious illness. However, there are little data on the occurrence, predictors, and timing of these discussions.To examine the occurrence, predictors, and timing of electronic health record (EHR)-documented goals-of-care discussions for hospitalized patients.This retrospective cohort study used natural language processing (NLP) to examine EHR-documented goals-of-care discussions for adults with chronic life-limiting illness or age ≥80 hospitalized 2015-2019. The primary outcome was NLP-identified documentation of a goals-of-care discussion during the index hospitalization. We used multivariable logistic regression to evaluate associations with baseline characteristics.Of 16,262 consecutive, eligible patients without missing data, 5,918 (36.4%) had a documented goals-of-care discussion during hospitalization; approximately 57% of these discussions occurred within 24 hours of admission. In multivariable analysis, documented goals-of-care discussions were more common for women (OR=1.26, 95%CI 1.18-1.36), older patients (OR=1.04 per year, 95%CI 1.03-1.04), and patients with more comorbidities (OR=1.11 per Deyo-Charlson point, 95%CI 1.10-1.13), cancer (OR=1.88, 95%CI 1.72-2.06), dementia (OR=2.60, 95%CI 2.29-2.94), higher acute illness severity (OR=1.12 per National Early Warning Score point, 95%CI 1.11-1.14), or prior advance care planning documents (OR=1.18, 95%CI 1.08-1.30). Documentation of these discussions was less common for racially or ethnically minoritized patients (OR=0.823, 95%CI 0.75-0.90).Among hospitalized patients with serious illness, documented goals-of-care discussions identified by NLP were more common among patients with older age and increased burden of acute or chronic illness, and less common among racially or ethnically minoritized patients. This suggests important disparities in goals-of-care discussions.

Background: It is not clear whether use of specialty palliative care consults and “comfort measures only” (CMO) order sets differ by type of intensive care unit (ICU). A better understanding of palliative care provided to these patients may help address heterogeneity of care across ICU types. Objectives: Examine utilization of specialty palliative care consultation and CMO order sets across several different ICU types in a multihospital academic health care system. Design: Retrospective cohort study using Washington State death certificates and data from the electronic health record. Setting/Subjects: Adults with a chronic medical illness who died in an ICU at one of two hospitals from July 2013 through December 2018. Five ICU types were identified by patient population and attending physician specialty. Measurements: Documentation of a specialty palliative care consult during a patient's terminal ICU stay and a CMO order set at time of death. Results: For 2706 eligible decedents, ICU type was significantly associated with odds of palliative care consultation (p

ImportancePatients receiving maintenance dialysis experience intensive patterns of end-of-life care that might not be consistent with their values.ObjectiveTo evaluate the association of patients’ health care values with engagement in advance care planning and end-of-life care.Design, Setting, and ParticipantsSurvey study of patients who received maintenance dialysis between 2015 and 2018 at dialysis centers in the greater metropolitan areas of Seattle, Washington, and Nashville, Tennessee, with longitudinal follow-up of decedents. Logistic regression models were used to estimate probabilities. Data analysis was conducted between May and October 2022.ExposuresA survey question about the value that the participant would place on longevity-focused vs comfort-focused care if they were to become seriously ill.Main Outcomes and MeasuresSelf-reported engagement in advance care planning and care received near the end of life through 2020 using linked kidney registry data and Medicare claims.ResultsOf 933 patients (mean [SD] age, 62.6 [14.0] years; 525 male patients [56.3%]; 254 [27.2%] identified as Black) who responded to the question about values and could be linked to registry data (65.2% response rate [933 of 1431 eligible patients]), 452 (48.4%) indicated that they would value comfort-focused care, 179 (19.2%) that they would value longevity-focused care, and 302 (32.4%) that they were unsure about the intensity of care they would value. Many had not completed an advance directive (estimated probability, 47.5% [95% CI, 42.9%-52.1%] of those who would value comfort-focused care vs 28.1% [95% CI, 24.0%-32.3%] of those who would value longevity-focused care or were unsure; P P P P P P = .64), discontinued dialysis (estimated probability, 38.3% [95% CI, 32.0%-44.8%] comfort focused vs 30.2% [95% CI, 23.0%-37.8%] longevity focused or unsure; P = .09), and enrolled in hospice (estimated probability, 32.2% [95% CI, 25.7%-38.7%] comfort focused vs 23.3% [95% CI, 16.4%-30.5%] longevity focused or unsure; P = .07) were not statistically different.Conclusions and RelevanceThis survey study found that there appeared to be a disconnect between patients’ expressed values, which were largely comfort focused, and their engagement in advance care planning and end-of-life care, which reflected a focus on longevity. These findings suggest important opportunities to improve the quality of care for patients receiving dialysis.

Background Polypharmacy raises the risk of drug-drug interactions and adverse events among patients with cancer. Most polypharmacy research has focused on adults age 65 or older enrolled in Medicare insurance. To better inform pharmacy practice and cancer care delivery, data are needed on polypharmacy among commercially insured patients with cancer and those younger than 65. Methods We performed a retrospective analysis of insurance enrollment and claims files linked to the Puget Sound Cancer Surveillance System for adults age 18 and older who were commercially insured, diagnosed with stage IV cancer, survived 30+ days after diagnosis, and did not enroll in hospice. We describe the prevalence of polypharmacy, chemotherapy use, and medication-related out-of-pocket (OOP) costs in the last month of life. Results Of 606 patients, 390 (64%) experienced polypharmacy (i.e. 5+ medications) in the last 30 days of life. Almost half (n = 297, 49%) received chemotherapy or targeted agents; chemotherapy was associated with significantly higher odds of polypharmacy (odds ratio (OR) 2.93, 95% confidence interval (CI) 2.04–4.20). The most commonly prescribed medications at end of life were opioids, benzodiazepines and anti-emetics. Among 484 patients (80%) incurring medication-related costs in the last month of life, median total OOP cost was $82 (interquartile range $30–$200). Seven patients (1%) had total costs above $5,000. The median chemotherapy-related OOP cost was $446 (IQR $150–$1896); 32 patients (7%) had chemotherapy-related OOP costs between $1,000 and $5,000. Conclusion Most patients with advanced cancer experienced polypharmacy at end of life, although most medications observed herein are commonly used for supportive care. Patients receiving chemotherapy had higher medication-related OOP costs, and chemotherapy was significantly associated with polypharmacy at end of life. Evaluation of polypharmacy at end of life may represent an important opportunity to improve quality of life and reduce costs for patients and families.

OBJECTIVES: To investigate the incidence, characteristics, and outcomes of in-hospital cardiac arrest in patients with coronavirus disease 2019 and to describe the characteristics and outcomes for patients with in-hospital cardiac arrest within the ICU, compared with non-ICU patients with in-hospital cardiac arrest. Finally, we evaluated outcomes stratified by age. DATA SOURCES: A systematic review of PubMed, EMBASE, and preprint websites was conducted between January 1, 2020, and December 10, 2020. Prospective Register of Systematic Reviews identification: CRD42020203369. STUDY SELECTION: Studies reporting on consecutive in-hospital cardiac arrest with a resuscitation attempt among patients with coronavirus disease 2019. DATA EXTRACTION: Two authors independently performed study selection and data extraction. Study quality was assessed with the Newcastle-Ottawa Scale. Data were synthesized according to the Preferred Reporting Items for Systematic Reviews guidelines. Discrepancies were resolved by consensus or through an independent third reviewer. DATA SYNTHESIS: Eight studies reporting on 847 in-hospital cardiac arrest were included. In-hospital cardiac arrest incidence varied between 1.5% and 5.8% among hospitalized patients and 8.0-11.4% among patients in ICU. In-hospital cardiac arrest occurred more commonly in older male patients. Most initial rhythms were nonshockable (83.9%, [asystole = 36.4% and pulseless electrical activity = 47.6%]). Return of spontaneous circulation occurred in 33.3%, with a 91.7% in-hospital mortality. In-hospital cardiac arrest events in ICU had higher incidence of return of spontaneous circulation (36.6% vs 18.7%; p < 0.001) and relatively lower mortality (88.7% vs 98.1%; p < 0.001) compared with in-hospital cardiac arrest in non-ICU locations. Patients greater than or equal to 60 years old had significantly higher in-hospital mortality than those less than 60 years (93.1% vs 87.9%; p = 0.019). CONCLUSIONS: Approximately, one in 20 patients hospitalized with coronavirus disease 2019 received resuscitation for an in-hospital cardiac arrest. Hospital survival after in-hospital cardiac arrest within the ICU was higher than non-ICU locations and seems comparable with prepandemic survival for nonshockable rhythms. Although the data provide guidance surrounding prognosis after in-hospital cardiac arrest, it should be interpreted cautiously given the paucity of information surrounding treatment limitations and resource constraints during the pandemic. Further research is into actual causative mechanisms is needed.

BACKGROUND: Most patients are unaware of approaches to treating advanced chronic kidney disease (CKD) other than dialysis. METHODS: We developed a dedicated decision aid on conservative kidney management using human-centered design principles in three phases: (1) discovery: engagement of informants to understand their needs and preferences; (2) design: multiple rapid cycles of ideation, prototyping, and testing of a decision aid with a small group of informants; and (3) implementation: testing the decision aid in real-world settings with attention to how the decision aid can be further refined. Informants included a national patient advisory committee on kidney diseases, 50 patients with stage 4 or 5 CKD and 35 of their family members, and 16 clinicians recruited from the greater Seattle area between June 2019 and September 2021. RESULTS: Findings from the discovery phase informed an initial prototype of the decision aid, which included five sections: a description of kidney disease and its signs and symptoms, an overview of conservative kidney management and the kinds of supports provided, self-reflection exercises to elicit patients’ values and goals, the pros and cons of conservative kidney management, and the option of changing one’s mind about conservative kidney management. The prototype underwent several rounds of iteration during its design phase, which resulted in the addition of an introductory section describing the intended audience and more detailed information in other sections. Findings from its implementation phase led to the addition of examples of common questions that patients and family members had about conservative kidney management and a final section on other related educational resources. CONCLUSIONS: Human-centered design principles supported a systematic and collaborative approach between researchers, patients, family members, and clinicians for developing a decision aid on conservative kidney management.

Little is known about end-of-life healthcare utilization and palliative care use among older adults with serious illness and limited English proficiency (LEP).We conducted a retrospective analysis of seriously-ill older adults (65+) with and without LEP, from a large health system, who died between 2010 and 2018. Primary outcomes were measures of healthcare utilization in the last 30 and 180 days of life: hospitalization, emergency department (ED) visits, intensive care unit (ICU) admission, and 30-day readmission. Secondary outcomes were palliative care consultation and advance care planning documents. We used multivariate analyses adjusted for sociodemographic factors including race and ethnicity.Among 18,490 decedents, 1363 had LEP. Patients with LEP were older at time of death (median age 80 vs 77 years), more likely to be female (48% vs 44%), of Asian descent (64% vs 4%), of Hispanic ethnicity (10% vs 2%), with12th grade education (38% vs 9%), and Medicaid (36% vs 6%). In the last 30 days of life, patients with LEP had higher odds of ED visits (33% vs 20%; aOR 1.41, 95% CI 1.26-1.72; p 0.001), readmission (12% vs 8%; aOR 1.64, 95% CI 1.30-2.07; p 0.001), and in-hospital death (45% vs 37%; aOR 1.24, 95% CI 1.07-1.44; p = 0.005) compared to patients without LEP. Findings were similar in the last 180-days of life. Only 14% of patients with LEP and 10% of those without LEP received palliative care consultation in the last month of life. Patients with LEP were less likely to have advance care planning documents than patients without LEP (36% vs 40%; aOR 0.68, 95% CI 0.50-0.80; p 0.001).Older adults with serious illness and LEP have higher rates of end-of-life healthcare utilization. Additional research is needed to identify drivers of these differences and inform linguistically- and culturally-appropriate interventions to improve end-of-life care in this population.

Rationale: Initial reports of case fatality rates (CFRs) among adults with coronavirus disease (COVID-19) receiving invasive mechanical ventilation (IMV) are highly variable. Objectives: To examine the CFR of patients with COVID-19 receiving IMV. Methods: Two authors independently searched PubMed, Embase, medRxiv, bioRxiv, the COVID-19 living systematic review, and national registry databases. The primary outcome was the “reported CFR” for patients with confirmed COVID-19 requiring IMV. “Definitive hospital CFR” for patients with outcomes at hospital discharge was also investigated. Finally, CFR was analyzed by patient age, geographic region, and study quality on the basis of the Newcastle-Ottawa Scale. Measurements and Results: Sixty-nine studies were included, describing 57,420 adult patients with COVID-19 who received IMV. Overall reported CFR was estimated as 45% (95% confidence interval [CI], 39–52%). Fifty-four of 69 studies stated whether hospital outcomes were available but provided a definitive hospital outcome on only 13,120 (22.8%) of the total IMV patient population. Among studies in which age-stratified CFR was available, pooled CFR estimates ranged from 47.9% (95% CI, 46.4–49.4%) in younger patients (age ≤40 yr) to 84.4% (95% CI, 83.3–85.4%) in older patients (age >80 yr). CFR was also higher in early COVID-19 epicenters. Overall heterogeneity is high (I2 >90%), with nonsignificant Egger’s regression test suggesting no publication bias. Conclusions: Almost half of patients with COVID-19 receiving IMV died based on the reported CFR, but variable CFR reporting methods resulted in a wide range of CFRs between studies. The reported CFR was higher in older patients and in early pandemic epicenters, which may be influenced by limited ICU resources. Reporting of definitive outcomes on all patients would facilitate comparisons between studies. Systematic review registered with PROSPERO (CRD42020186997).

PURPOSE: Intensive care interventions that prolong life without achieving meaningful benefit are considered clinically “inappropriate”. In 2012, the frequency of perceived-inappropriate critical care was 10.8% at one academic health system; and we aimed to re-evaluate this frequency. METHODS: For 4 months in 2017, we surveyed critical care physicians daily and asked whether each patient was receiving appropriate, probably inappropriate, or inappropriate critical care. Patients were categorized into three groups: 1) patients for whom treatment was never inappropriate, 2) patients with at least one assessment that treatment was probably inappropriate, but no inappropriate treatment assessments, and 3) patients who had at least one assessment of inappropriate treatment. RESULTS: Fifty-five physicians made 10,105 assessments on 1424 patients. Of these, 94 (6.6%) patients received at least one assessment of inappropriate critical care, which is lower than 2012 (10.8% (p0.05). Inpatient mortality in 2017 was 73% for patients receiving inappropriate critical care. CONCLUSIONS: Over five years the proportion of patients perceived to be receiving inappropriate critical care dropped by 40%. Understanding the reasons for such change might elucidate how to continue to reduce inappropriate critical care.

Palliative care has potential to improve quality of life and goal-concordant care for patients with adult congenital heart disease (ACHD). However, it is rarely employed prior to critical illness because the best methods for implementation are not well-defined. We qualitatively evaluated ACHD patients' understanding of and opinions regarding palliative care and advance care planning (ACP) to better define the needs of this population. We conducted a thematic analysis of 25 semistructured interviews with patients with ACHD in which we assessed participants' perspectives on the need for, and barriers and facilitators to, the use of palliative care and ACP. In a group of participants with ACHD (mean age 38, 48% male) classified as simple (24%), moderate (32%), or complex (44%), we identified 4 major themes: (1) using knowledge to combat future uncertainties; (2) unfamiliarity with and limited exposure to palliative care and ACP; (3) facilitators and barriers to engaging in palliative care and ACP; and (4) importance of timing and presentation of ACP discussions. In conclusion, participants expressed a desire for knowledge about ACHD progression and treatment. They supported routine incorporation of palliative care and ACP and identified related facilitators and barriers to doing so. Importantly, timing and format of these discussions must be individualized using shared decision-making between clinicians, patients, and their families.

Context Goal-concordant care is an important indicator of high-quality care in serious illness. Objectives To estimate the prevalence of patient-reported receipt of goal-concordant care among seriously ill outpatients and identify factors associated with the absence of patient-reported goal concordance. Methods Analysis of enrollment surveys from a multicenter cluster-randomized trial of outpatients with serious illness. Patients reported their prioritized health care goal and the focus of their current medical care; these items were matched to define receipt of goal-concordant care. Results Of 405 patients with a prioritized health care goal, 58% reported receipt of goal-concordant care, 17% goal-discordant care, and 25% were uncertain of the focus of their care. Patient-reported receipt of goal concordance differed by patient goal. For patients who prioritized extending life, 86% reported goal-concordant care, 2% goal-discordant care, and 12% were uncertain of the focus of their care. For patients who prioritized relief of pain and discomfort, 51% reported goal-concordant care, 21% goal-discordant care, and 28% were uncertain of the focus of their care. Patients who prioritized a goal of relief of pain and discomfort were more likely to report goal-discordant care than patients who prioritized a goal of extending life (relative risk ratio 22.20; 95% CI 4.59, 107.38). Conclusion Seriously ill outpatients who prioritize a goal of relief of pain and discomfort are less likely to report receipt of goal-concordant care than patients who prioritize extending life. Future interventions designed to improve receipt of goal-concordant care should focus on identifying patients who prioritize relief of pain and discomfort and promoting care aligned with that goal.

Context Hospice care focuses on improving the quality of end-of-life care and respecting patients’ preferences regarding end-of-life treatment. The impact of coronavirus disease 2019 (COVID-19) on the utilization of hospice services is unknown. Objectives To investigate the utilization of hospice care services before and during the COVID-19 pandemic. Methods All patients (n = 19,900) cared for at Taipei City Hospital from January 2019 to April 2020 were divided into three time points: January–April 2019 (before COVID-19), May–December 2019 (interim), and January–April 2020 (during COVID-19). This cohort study compared the monthly utilization of hospice services before and during the COVID-19 pandemic. Results There was no significant difference in hospice home visits (194 vs. 184; P = 0.686) and new enrollments (15 vs. 14; P = 0.743) to hospice home care before and during the pandemic. However, the bed occupancy rate in hospice units in the hospital was significantly reduced from 66.2% before the pandemic to 37.4% during the pandemic (P = 0.029), whereas that in nonhospice units had a nonsignificant decrease from 81.6% before the pandemic to 71.8% during the pandemic (P = 0.086). During the pandemic, the number of inpatient days was affected more severely in hospice units than in nonhospice units (−42.4% vs. −10.9%; P = 0.029). Conclusions This study suggests that hospice home care services were maintained during the COVID-19 pandemic, while the utilization of hospice inpatient care services reduced. Home care for hospice patients is an essential component of palliative care during a pandemic.

Context The coronavirus disease 2019 (COVID-19) pandemic is stressing health care systems throughout the world. Significant numbers of patients are being admitted to the hospital with severe illness, often in the setting of advanced age and underlying comorbidities. Therefore, palliative care is an important part of the response to this pandemic. The Seattle area and UW Medicine have been on the forefront of the pandemic in the U.S. Methods UW Medicine developed a strategy to implement a palliative care response for a multihospital health care system that incorporates conventional capacity, contingency capacity, and crisis capacity. The strategy was developed by our palliative care programs with input from the health care system leadership. Results In this publication, we share our multifaceted strategy to implement high-quality palliative care in the context of the COVID-19 pandemic that incorporates conventional, contingency, and crisis capacity and focuses on the areas of the hospital caring for the most patients: the emergency department, intensive care units, and acute care services. The strategy focuses on key content areas, including identifying and addressing goals of care, addressing moderate and severe symptoms, and supporting family members. Conclusion Strategy planning for delivery of high-quality palliative care in the context of the COVID-19 pandemic represents an important area of need for our health care systems. We share our experiences of developing such a strategy to help other institutions conduct and adapt such strategies more quickly.

Objectives:To assess the feasibility and efficacy of implementing “Family Care Rituals” as a means of engaging family members in the care of patients admitted to the ICU with a high risk of ICU mortality on outcomes including stress-related symptoms in family members.Design:Prospective, before-and-a