Assessing fairness in machine learning models: A study of racial bias using matched counterparts in mortality prediction for patients with chronic diseases.

OBJECTIVE: Existing approaches to fairness evaluation often overlook systematic differences in the social determinants of health, like demographics and socioeconomics, among comparison groups, potentially leading to inaccurate or even contradictory conclusions. This study aims to evaluate racial disparities in predicting mortality among patients with chronic diseases using a fairness detection method that considers systematic differences. METHODS: We created five datasets from Mass General Brigham's electronic health records (EHR), each focusing on a different chronic condition: congestive heart failure (CHF), chronic kidney disease (CKD), chronic obstructive pulmonary disease (COPD), chronic liver disease (CLD), and dementia. For each dataset, we developed separate machine learning models to predict 1-year mortality and examined racial disparities by comparing prediction performances between Black and White individuals. We compared racial fairness evaluation between the overall Black and White individuals versus their counterparts who were Black and matched White individuals identified by propensity score matching, where the systematic differences were mitigated. RESULTS: We identified significant differences between Black and White individuals in age, gender, marital status, education level, smoking status, health insurance type, body mass index, and Charlson comorbidity index (p-value < 0.001). When examining matched Black and White subpopulations identified through propensity score matching, significant differences between particular covariates existed. We observed weaker significance levels in the CHF cohort for insurance type (p = 0.043), in the CKD cohort for insurance type (p = 0.005) and education level (p = 0.016), and in the dementia cohort for body mass index (p = 0.041); with no significant differences for other covariates. When examining mortality prediction models across the five study cohorts, we conducted a comparison of fairness evaluations before and after mitigating systematic differences. We revealed significant differences in the CHF cohort with p-values of 0.021 and 0.001 in terms of F1 measure and Sensitivity for the AdaBoost model, and p-values of 0.014 and 0.003 in terms of F1 measure and Sensitivity for the MLP model, respectively. DISCUSSION AND CONCLUSION: This study contributes to research on fairness assessment by focusing on the examination of systematic disparities and underscores the potential for revealing racial bias in machine learning models used in clinical settings.

Racial and Ethnic Disparities in Serious Illness Conversation Quality during the COVID-19 Pandemic.

CONTEXT: The COVID-19 pandemic disproportionately impacted non-Hispanic Black and Hispanic patients. However, little is known about the quality of serious illness communication in these communities during this time. OBJECTIVE: We aimed to determine whether racial and ethnic disparities manifested in serious illness conversations during the pandemic. METHODS: This was a retrospective, observational, cohort study of adult patients with a documented serious illness conversation from March 2020 to April 2021. Serious illness conversation documentation quality was assessed by counting the median number (IQR) of conversation domains and their elements included in the documentation. Domains included (1) values and goals, (2) prognosis and illness understanding, (3) end-of-life care planning, and (4) life-sustaining treatment preferences. A multivariable ordinal logistic regression analysis was conducted to assess associations between differences in serious illness documentation quality with patient race and ethnicity. RESULTS: Among 291 patients, 149 (51.2%) were non-Hispanic White; 81 (27.8%) were non-Hispanic Black; and 61 (21.0%) were Hispanic patients. Non-Hispanic Black patients were associated with fewer domains (OR 0.46 [95% CI 0.25, 0.84]; P=.01) included in their serious illness conversation documentation compared to non-Hispanic White patients. Both non-Hispanic Black (OR 0.35 [95% CI 0.20, 0.62]; P<.001) and Hispanic patients (OR 0.29 [95% CI 0.14, 0.58]; P<.001) were associated with fewer elements in the values and goals domain compared to non-Hispanic White patients in their serious illness documentation. CONCLUSION: During the COVID-19 pandemic, serious illness conversation documentation among non-Hispanic Black and Hispanic patients was less comprehensive compared to non-Hispanic White patients.

Looking Beyond Mortality Prediction: Primary Care Physician Views of Patients' Palliative Care Needs Predicted by a Machine Learning Tool.

OBJECTIVES: To assess primary care physicians' (PCPs) perception of the need for serious illness conversations (SIC) or other palliative care interventions in patients flagged by a machine learning tool for high 1-year mortality risk. METHODS: We surveyed PCPs from four Brigham and Women's Hospital primary care practice sites. Multiple mortality prediction algorithms were ensembled to assess adult patients of these PCPs who were either enrolled in the hospital's integrated care management program or had one of several chronic conditions. The patients were classified as high or low risk of 1-year mortality. A blinded survey had PCPs evaluate these patients for palliative care needs. We measured PCP and machine learning tool agreement regarding patients' need for an SIC/elevated risk of mortality. RESULTS: Of 66 PCPs, 20 (30.3%) participated in the survey. Out of 312 patients evaluated, 60.6% were female, with a mean (standard deviation [SD]) age of 69.3 (17.5) years, and a mean (SD) Charlson Comorbidity Index of 2.80 (2.89). The machine learning tool identified 162 (51.9%) patients as high risk. Excluding deceased or unfamiliar patients, PCPs felt that an SIC was appropriate for 179 patients; the machine learning tool flagged 123 of these patients as high risk (68.7% concordance). For 105 patients whom PCPs deemed SIC unnecessary, the tool classified 83 as low risk (79.1% concordance). There was substantial agreement between PCPs and the tool (Gwet's agreement coefficient of 0.640). CONCLUSIONS: A machine learning mortality prediction tool offers promise as a clinical decision aid, helping clinicians pinpoint patients needing palliative care interventions.

Use of Cancer-Directed therapy at the end of life among adolescents and young adults.

BACKGROUND: Adolescents and young adults (AYAs) frequently receive chemotherapy near death. We know less about use of targeted agents and immunotherapy or trends over time. METHODS: We conducted a retrospective cohort study of 1,836 AYAs with cancer who died between 2009-2019 after receiving care at one of three sites (Dana-Farber Cancer Institute, Kaiser Permanente Northern California, and Kaiser Permanente Southern California). We reviewed electronic health data and medical records to examine use of cancer-directed therapy in the last 90 days of life, including chemotherapy, targeted therapy, immunotherapy, and investigational drugs. RESULTS: Over the study period, 35% of AYAs received chemotherapy in the last 90 days of life; 24% received targeted therapy, 7% immunotherapy, and 5% investigational drugs. Fifty-six percent received at least one form of systemic cancer-directed therapy in the last 90 days of life. After adjustment for patient sex, race, ethnicity, age, site of care, diagnosis, and years from diagnosis to death, the proportion of AYAs receiving targeted therapy (odds ratio (OR) 1.05 per year of death, 95% confidence interval (CI) 1.02-1.10, P = .006), immunotherapy (OR 1.27, 95%CI 1.18-1.38, P<.0001), and any cancer-directed therapy (OR1.04, 95%CI 1.01-1.08, P=.01) in the last 90 days of life increased over time. CONCLUSIONS: More than half of AYAs receive cancer therapy in the last 90 days of life, and use of novel agents such as targeted therapy and immunotherapy are increasing over time. While some AYAs may wish to continue cancer therapy while living with advanced disease, efforts are needed to ensure that use of cancer-directed therapy meets preferences of AYAs approaching death.

A Mixed Methods Analysis of Standardized Documentation of Serious Illness Conversations Within an Electronic Health Record Module During Hospitalization.

BACKGROUND: Analysis of documented Serious Illness Conversations (SICs) in the inpatient setting can help clinicians align management to address patient and caregiver needs. METHODS: We conducted a mixed methods analysis of the first instance of standardized documentation of a SIC within a structured module among hospitalized general medicine patients from 2018 to 2019. Percentage of documentations that included a description of patient or family understanding of the patient's medical condition and use of radio buttons to answer the "prognostic information shared," "hopes," and "worries" modules are reported. Using grounded theory approach, physicians analyzed free text entries to: "What is important to the patient/family?" and "Recommendations or next steps planned." RESULTS: Out of 5142 patients, 59 patients had a documented SIC. Patient or family understanding of the medical condition(s) was reported in 56 (95%). For "prognostic information shared," the most frequently selected radio buttons were: 49 (83%) incurable disease and 28 (48%) prognosis of weeks to months while those for "hopes" were: 52 (88%) be comfortable and 27 (46%) be at home and for "worries" were: 49 (83%) other physical suffering and 36 (61%) pain. Themes generated from entries to "What's important to patient/family?" included being with loved ones; comfort; mentally and physically present; and reliable care while those for "Recommendations" were coordinating support services; symptom management; and support and communication. CONCLUSIONS: SIC content indicated concern about pain and reliable care suggesting the complex, intensive nature of caring for seriously ill patients and the need to consider SICs earlier in the life course of patients.

The Association of Standardized Documentation of Serious Illness Conversations With Healthcare Utilization in Hospitalized Patients: A Propensity Score Matched Cohort Analysis.

Background: Serious Illness Conversations (SICs) conducted during hospitalization can lead to meaningful patient participation in the decision-making process affecting medical management. The aim of this study is to determine if standardized documentation of a SIC within an institutionally approved EHR module during hospitalization is associated with palliative care consultation, change in code status, hospice enrollment prior to discharge, and 90-day readmissions. Methods: We conducted retrospective analyses of hospital encounters of general medicine patients at a community teaching hospital affiliated with an academic medical center from October 2018 to August 2019. Encounters with standardized documentation of a SIC were identified and matched by propensity score to control encounters without a SIC in a ratio of 1:3. We used multivariable, paired logistic regression and Cox proportional-hazards modeling to assess key outcomes. Results: Of 6853 encounters (5143 patients), 59 (.86%) encounters (59 patients) had standardized documentation of a SIC, and 58 (.85%) were matched to 167 control encounters (167 patients). Encounters with standardized documentation of a SIC had greater odds of palliative care consultation (odds ratio [OR] 60.10, 95% confidence interval [CI] 12.45-290.08, P < .01), a documented code status change (OR 8.04, 95% CI 1.54-42.05, P = .01), and discharge with hospice services (OR 35.07, 95% CI 5.80-212.08, P < .01) compared to matched controls. There was no significant association with 90-day readmissions (adjusted hazard ratio [HR] .88, standard error [SE] .37, P = .73). Conclusions: Standardized documentation of a SIC during hospitalization is associated with palliative care consultation, change in code status, and hospice enrollment.

Kidney Transplant Clinicians' Perceptions of Palliative Care for Patients With Failing Allografts in the US: A Mixed Methods Study.

RATIONALE & OBJECTIVE: Kidney transplant patients with failing allografts have a physical and psychological symptom burden as well as high morbidity and mortality. Palliative care is underutilized in this vulnerable population. We described kidney transplant clinicians' perceptions of palliative care to delineate their perceived barriers to and facilitators of providing palliative care to this population. STUDY DESIGN: National explanatory sequential mixed methods study including an online survey and semistructured interviews. SETTING & PARTICIPANTS: Kidney transplant clinicians in the United States surveyed and interviewed from October 2021 to March 2022. ANALYTICAL APPROACH: Descriptive summary of survey responses, thematic analysis of qualitative interviews, and mixed methods integration of data. RESULTS: A total of 149 clinicians completed the survey, and 19 completed the subsequent interviews. Over 90% of respondents agreed that palliative care can be helpful for patients with a failing kidney allograft. However, 46% of respondents disagreed that all patients with failing allografts benefit from palliative care, and two-thirds thought that patients would not want serious illness conversations. More than 90% of clinicians expressed concern that transplant patients and caregivers would feel scared or anxious if offered palliative care. The interviews identified three main themes: (1) transplant clinicians' unique sense of personal and professional responsibility was a barrier to palliative care engagement, (2) clinicians' uncertainty regarding the timing of palliative care collaboration would lead to delayed referral, and (3) clinicians felt challenged by factors related to patients' cultural backgrounds and identities, such as language differences. Many comments reflected an unfamiliarity with the broad scope of palliative care beyond end-of-life care. LIMITATIONS: Potential selection bias. CONCLUSIONS: Our study suggests that multiple barriers related to patients, clinicians, health systems, and health policies may pose challenges to the delivery of palliative care for patients with failing kidney transplants. This study illustrates the urgent need for ongoing efforts to optimize palliative care delivery models dedicated to kidney transplant patients, their families, and the clinicians who serve them. PLAIN-LANGUAGE SUMMARY: Kidney transplant patients experience physical and psychological suffering in the context of their illnesses that may be amenable to palliative care. However, palliative care is often underutilized in this population. In this mixed-methods study, we surveyed 149 clinicians across the United States, and 19 of them completed semistructured interviews. Our study results demonstrate that several patient, clinician, system, and policy factors need to be addressed to improve palliative care delivery to this vulnerable population.

The differences in code status conversation approaches reported by emergency medicine and palliative care clinicians: A mixed-method study.

BACKGROUND: During acute health deterioration, emergency medicine and palliative care clinicians routinely discuss code status (e.g., shared decision making about mechanical ventilation) with seriously ill patients. Little is known about their approaches. We sought to elucidate how code status conversations are conducted by emergency medicine and palliative care clinicians and why their approaches are different. METHODS: We conducted a sequential-explanatory, mixed-method study in three large academic medical centers in the Northeastern United States. Attending physicians and advanced practice providers working in emergency medicine and palliative care were eligible. Among the survey respondents, we purposefully sampled the participants for follow-up interviews. We collected clinicians' self-reported approaches in code status conversations and their rationales. A survey with a 5-point Likert scale ("very unlikely" to "very likely") was used to assess the likelihood of asking about medical procedures (procedure based) and patients' values (value based) during code status conversations, followed by semistructured interviews. RESULTS: Among 272 clinicians approached, 206 completed the survey (a 76% response rate). The reported approaches differed greatly (e.g., 91% of palliative care clinicians reported asking about a patient's acceptable quality of life compared to 59% of emergency medicine clinicians). Of the 206 respondents, 118 (57%) agreed to subsequent interviews; our final number of semistructured interviews included seven emergency medicine clinicians and nine palliative care clinicians. The palliative care clinicians stated that the value-based questions offer insight into patients' goals, which is necessary for formulating a recommendation. In contrast, emergency medicine clinicians stated that while value-based questions are useful, they are vague and necessitate extended discussions, which are inappropriate during emergencies. CONCLUSIONS: Emergency medicine and palliative care clinicians reported conducting code status conversations differently. The rationales may be shaped by their clinical practices and experiences.

Quality of End-of-Life Care Among Adolescents and Young Adults With Cancer.

Adolescents, young adults with cancer receive limited psychosocial and spiritual support near death.

What Constitutes Quality of Life? Perspectives of Adolescents and Young Adults With Advanced Cancer.

BACKGROUND: Adolescents and young adults (AYAs) with advanced cancer identify maintaining a good quality of life (QoL) as a central goal of end-of-life care. QoL is a dynamic and subjective overarching concept that refers to an individual's relative satisfaction with their own life. Despite its importance to AYAs with advanced cancer, a patient-centered definition of QoL is lacking in this population. PATIENTS AND METHODS: This qualitative secondary analysis of semistructured interviews was conducted across 3 institutions and 1 online support community among AYA patients with advanced cancer, family caregivers, and health care providers who cared for living or recently deceased AYAs. Interviewees were asked about priorities in receipt of care. Interviews were transcribed using NVivo software for primary analysis, and previously coded excerpts were screened for references to QoL. Relevant excerpts were sorted into organizing domains. RESULTS: Participants included 23 AYA patients, 28 family caregivers, and 29 health care providers (including physicians, nurses, nurse practitioners, social workers, and psychologists). Four domains of QoL were identified: psychosocial and physical well-being, dignity, normalcy, and personal and family relationships. Within each domain there was agreement across AYAs, caregivers, and health care providers, with nuanced perspectives provided by AYAs of different ages. Personal and family relationships was the most frequently referenced domain of QoL among all participants. A common feature of each domain was that adaptation to current circumstances impacted perspectives on QoL. Patients valued active participation in the development of a care plan that supported these domains. CONCLUSIONS: AYAs with advanced cancer, their caregivers, and health care providers agree on several broad domains of QoL in this population. To provide high-quality, patient-centered care, care plans should integrate these domains to enable AYAs to maximize their QoL throughout their advanced cancer care.

Video Intervention and Goals-of-Care Documentation in Hospitalized Older Adults: The VIDEO-PCE Randomized Clinical Trial.

Importance: Despite the benefits of goals-of-care (GOC) communication, many hospitalized individuals never communicate their goals or preferences to clinicians. Objective: To assess whether a GOC video intervention delivered by palliative care educators (PCEs) increased the rate of GOC documentation. Design, Setting, and Participants: This pragmatic, stepped-wedge cluster randomized clinical trial included patients aged 65 years or older admitted to 1 of 14 units at 2 urban hospitals in New York and Boston from July 1, 2021, to October 31, 2022. Intervention: The intervention involved PCEs (social workers and nurses trained in GOC communication) facilitating GOC conversations with patients and/or their decision-makers using a library of brief, certified video decision aids available in 29 languages. Patients in the control period received usual care. Main Outcome and Measures: The primary outcome was GOC documentation, which included any documentation of a goals conversation, limitation of life-sustaining treatment, palliative care, hospice, or time-limited trials and was obtained by natural language processing. Results: A total of 10 802 patients (mean [SD] age, 78 [8] years; 51.6% male) were admitted to 1 of 14 hospital units. Goals-of-care documentation during the intervention phase occurred among 3744 of 6023 patients (62.2%) compared with 2396 of 4779 patients (50.1%) in the usual care phase (P < .001). Proportions of documented GOC discussions for Black or African American individuals (865 of 1376 [62.9%] vs 596 of 1125 [53.0%]), Hispanic or Latino individuals (311 of 548 [56.8%] vs 218 of 451 [48.3%]), non-English speakers (586 of 1059 [55.3%] vs 405 of 863 [46.9%]), and people living with Alzheimer disease and related dementias (520 of 681 [76.4%] vs 355 of 570 [62.3%]) were greater during the intervention phase compared with the usual care phase. Conclusions and Relevance: In this stepped-wedge cluster randomized clinical trial of older adults, a GOC video intervention delivered by PCEs resulted in higher rates of GOC documentation compared with usual care, including among Black or African American individuals, Hispanic or Latino individuals, non-English speakers, and people living with Alzheimer disease and related dementias. The findings suggest that this form of patient-centered care delivery may be a beneficial decision support tool. Trial Registration: ClinicalTrials.gov Identifier: NCT04857060.

Adding Pals to KidneyPal: Creating a Virtual Patient and Family Advisory Council for Kidney Palliative Care.

Patient and family advisory councils (PFACs) represent one method of engaging patients and families in clinical program development and research, but existing practices too often exclude marginalized and minority voices. As a kidney palliative care team (KidneyPal) at a large academic medical center, we sought to create a PFAC that explicitly considered equity and inclusion in its approach to advisor recruitment. We developed two major innovations to reduce selection bias in our KidneyPal PFAC: adaptation to an entirely virtual process and alteration of the advisor recruitment and enrollment process. We eliminated several potential barriers to participation for our patients and their family members, a population with higher rates of advanced age, nonwhite ethnicity, and limited English proficiency than the local general population. We removed application requirements including lengthy online training modules, detailed employment history, a personal essay, and a criminal background check. The KidneyPal PFAC may act as a model for improving equity and inclusion in virtual patient advisory councils.

Discussions About Goals of Care and Advance Care Planning Among Adolescents and Young Adults With Cancer Approaching the End of Life.

PURPOSE: Adolescents and young adults (AYAs) with cancer receive high rates of medically intensive measures at the end of life. This study aimed to characterize the prevalence and timing of conversations about goals of care and advance care planning among AYAs at the end of life as one potential influence on care received. METHODS: This was a review of electronic health data and medical records for 1,929 AYAs age 12-39 years who died after receiving care at one of three sites between 2003 and 2019, including documented conversations about goals of care and advance care planning, and care received. RESULTS: A majority of AYAs were female (54%) and White (61%); 12% were Asian, 8% Black, and 27% Hispanic. Most patients had documented discussions about prognosis (86%), goals of care (83%), palliative care (79%), hospice (79%), and preferred location of death (64%). When last documented goals of care were evaluated, 69% of patients wanted care focused on palliation; however, 29% of those with palliative goals spent time in the intensive care unit (ICU) in the last month of life, and 32% had multiple emergency room (ER) visits. When goals-of-care discussions happened earlier, >30 days before death, AYAs were less likely to receive chemotherapy in the last 14 days of life (P = .001), ICU care (P < .001), ER visits (P < .001), and hospitalizations in the last month (P < .001). CONCLUSION: High rates of medically intensive measures among AYAs near the end of life do not appear to be the result of a lack of discussions about goals of care and advance care planning. Although some interventions may be used to support palliative goals, earlier discussions have potential to reduce late-life intensive measures.

Patient, Caregiver, and Clinician Perspectives on Core Components of Therapeutic Alliance for Adolescents and Young Adults With Advanced Cancer: A Qualitative Study.

Importance: The patient-clinician therapeutic alliance is an important aspect of high-quality cancer care. However, components of the therapeutic alliance in adolescents and young adults (AYAs, aged 12-39 years) with cancer have not been defined. Objective: To identify components of and barriers to the therapeutic alliance between AYAs, caregivers, and clinicians from the perspective of all key stakeholders. Design, Setting, and Participants: In this qualitative study, semistructured in-depth interviews with patients, caregivers, and clinicians were conducted from 2018 to 2021 with no additional follow-up, with content analysis of resulting transcripts. Participants were recruited from Dana-Farber Cancer Institute, Kaiser Permanente Northern California, Kaiser Permanente Southern California, and an online cancer support community (Cactus Cancer Society). Eligible participants were English- or Spanish-speaking. Eligible patients were aged 12 to 39 years with stage IV or recurrent cancer. Eligible caregivers cared for an AYA living with advanced cancer or one who had died within 5 years. Eligible clinicians routinely provided care for AYAs with cancer. Main Outcomes and Measures: Perspectives on therapeutic alliance. Results: Interviews were conducted with 80 participants: 23 were patients (48% were female; 78% were White), 28 were caregivers (82% were female; 50% were White), and 29 were clinicians (69% were female; 45% were White). The mean (SD) age of patients was 29 (7.3) years. Interviews identified 6 components of therapeutic alliance: (1) compassion; (2) sense of connection; (3) clinician presence; (4) information sharing; (5) shared goals; and (6) individualization of care. While some domains were represented in prior models of therapeutic alliance, a unique domain was identified related to the need for individualization of the approach to care for AYA patients and their caregivers. Interviews also identified potential barriers to building the therapeutic alliance specific to the AYA population, including managing discordant needs between patients and caregivers and communication challenges at the end of life. Conclusions and Relevance: This study identified core components and barriers to building therapeutic alliance in the AYA advanced cancer population from the perspective of all the key stakeholders in the relationship. A novel component highlighting the need for individualization was identified. This model enables a deeper understanding of how to build therapeutic alliance in the AYA advanced cancer population, which may guide clinician training and facilitate improved care for this vulnerable population.

Forms or Free-Text? Measuring Advance Care Planning Activity Using Electronic Health Records.

Advance care planning (ACP) discussions seek to guide future serious illness care. These discussions may be recorded in the electronic health record by documentation in clinical notes, structured forms and directives, and physician orders. Yet, most studies of ACP prevalence have only examined structured electronic health record elements and ignored data existing in notes. We sought to investigate the relative comprehensiveness and accuracy of ACP documentation from structured and unstructured electronic health record data sources. We evaluated structured and unstructured ACP documentation present in the electronic health records of 435 patients with cancer drawn from three separate healthcare systems. We extracted structured ACP documentation by manually annotating written documents and forms scanned into the electronic health record. We coded unstructured ACP documentation using a rule-based natural language processing software that identified ACP keywords within clinical notes and was subsequently reviewed for accuracy. The unstructured approach identified more instances of ACP documentation (238, 54.7% of patients) than the structured ACP approach (187, 42.9% of patients). Additionally, 16.6% of all patients with structured ACP documentation only had documents that were judged as misclassified, incomplete, blank, unavailable, or a duplicate of a previously entered erroneous document. ACP documents scanned into electronic health records represent a limited view of ACP activity. Research and measures of clinical practice with ACP should incorporate information from unstructured data.

Structural Barriers to Well-grounded Advance Care Planning for the Seriously Ill: a Qualitative Study of Clinicians' and Administrators' Experiences During a Pragmatic Trial.

BACKGROUND: Advance Care Planning (ACP) comprises an iterative communication process aimed at understanding patients' goals, values, and preferences in the context of considering and preparing for future medical treatments and decision making in serious illness. The COVID pandemic heightened patients' and clinicians' awareness of the need for ACP. OBJECTIVE: Our goal was to explore the experiences of clinicians and administrators in the context of an intervention to improve ACP during the COVID pandemic. DESIGN: Qualitative interview study. PARTICIPANTS: Clinicians and administrators across five sites that participated in the ACP-COVID trial. APPROACH: We conducted semi-structured, qualitative interviews examining the context and approach to ACP. Interviews were analyzed using template analysis to systematically organize the data and facilitate review across the categories and participants. Templates were developed with iterative input and line-by-line review by the analytic team, to reach consensus. Findings were then organized into emergent themes. KEY RESULTS: Across 20 interviews (4 administrators, 16 clinicians) we identified three themes related to how participants thought about ACP: (1) clinicians have varying views of what constitutes ACP; (2) the health system critically shapes ACP culture and norms; and (3) the centrality of clinicians' affective experience and own needs related to ACP. Varying approaches to ACP include a forms-focused approach; a discussion-based approach; and a parental approach. System features that shape ACP norms are (1) the primacy of clinician productivity measures; (2) the role of the EHR; and (3) the culture of quality improvement. CONCLUSIONS: Despite high organizational commitment to ACP, we found that the health system channeled clinicians' ACP efforts narrowly on completion of forms, in tension with the ideal of well-grounded ACP. This resulted in a state of moral distress that risks undermining confidence in the process of ACP and may increase risk of harm for patients, family/caregivers, and providers. TRIAL REGISTRATION: ClinicalTrials.gov Identifier: NCT04660422.

Conservative Kidney Management in Kidney Transplant Populations.

Conservative kidney management (CKM) has been increasingly accepted as a therapeutic option for seriously ill patients with advanced chronic kidney disease. CKM is active medical management of advanced chronic kidney disease without dialysis, with a focus on delaying the worsening of kidney disease and minimizing symptom burden. CKM may be considered a suitable option for kidney transplant recipients with poorly functioning and declining allografts, defined as patients with low estimated glomerular filtration rate (<20 mL/min per 1.73 m2) who are approaching allograft failure. CKM may be a fitting option for transplant patients facing high morbidity and mortality with or without dialysis resumption, and it should be offered as a choice for this patient population. In this review, we describe clinical considerations in caring for patients with poorly functioning and declining kidney allografts, especially the unique decision-making process around kidney replacement therapies. We discuss ways to incorporate CKM as an option for these patients. We also discuss financial and policy considerations in providing CKM for this population. Patients with poorly functioning and declining kidney allografts should be supported throughout transitions of care by an interprofessional and multidisciplinary team attuned to their unique challenges. Further research on when, who, and how to integrate CKM into existing care structures for patients with poorly functioning and declining kidney allografts is needed.

Top Ten Tips Palliative Care Clinicians Should Know About Delivering Specialty-Aligned Palliative Care.

Specialty-aligned palliative care (SAPC) refers to interprofessional palliative care (PC) that is delivered to a specific population of patients in close partnership with other primary or specialty clinicians. As evolving PC models address physical, psychosocial, and spiritual suffering across illnesses and settings, PC clinicians must acquire advanced knowledge of disease-specific symptoms, common treatments, and complications that impact prognosis and outcomes. The tips provided in this article draw on the experience and knowledge of interprofessional PC and other specialist clinicians from diverse institutions across the United States who have developed and studied SAPC services across different disease groups. Recommendations include focusing on approaching specialty team partnerships with humility, curiosity, and diplomacy; focusing on patient populations where PC needs are great; clarifying how work and responsibilities will be divided between PC and other clinicians to the extent possible; using consults as opportunities for bidirectional learning; and adapting workflows and schedules to meet specialty team needs while managing expectations and setting limits as appropriate. Furthermore, to provide effective SAPC, PC clinicians must learn about the specific symptoms, prognoses, and common treatments of the patients they are serving. They must also build trusting relationships and maintain open communication with patients and referring clinicians to ensure integrated and aligned PC delivery.

Quality Indicators for Adolescents and Young Adults With Advanced Cancer: A Modified Delphi Process With Patients, Family Members, and Clinicians.

CONTEXT: Quality measures have been devised for end-of-life care of older adults with cancer, but are lacking for adolescents and young adults (AYAs). OBJECTIVE: We previously conducted interviews with AYAs, family caregivers, and clinicians to identify priority domains for high quality care of AYAs with advanced cancer. The goal of this study was to use a modified Delphi process to form consensus around the highest priority quality indicators. METHODS: A modified Delphi process was conducted with 10 AYAs with recurrent or metastatic cancer, 11 family caregivers, and 29 multidisciplinary clinicians, using small group web conferences. Participants were asked to rate the importance of each of 41 potential quality indicators, rank the 10 most important, and engage in discussion to reconcile differences. RESULTS: Of 41 initial indicators, 34 were rated as highly important (rating seven, eight, or nine on a nine-point scale) by >70% of participants. The panel was unable to reach consensus around the 10 most important indicators. Instead, participants recommended retaining a larger set of indicators to reflect potential for different priorities across the population, resulting in a final set of 32 indicators. Recommended indicators broadly encompassed attention to physical symptoms; quality of life; psychosocial, and spiritual care; communication and decision-making; relationships with clinicians; care and treatment; and independence. CONCLUSION: A patient- and family-centered process for quality indicator development led to strong endorsement of multiple potential indicators by Delphi participants. Further validation and refinement will be performed using a survey of bereaved family members.

"The simple life experiences that every other human gets": Desire for normalcy among adolescents and young adults with advanced cancer.

BACKGROUND: Adolescents and young adults (AYAs) with advanced cancer identify normalcy as an important component of quality end-of-life care. We sought to define domains of normalcy and identify ways in which clinicians facilitate or hinder normalcy during advanced cancer care. PROCEDURE: This was a secondary analysis of a qualitative study that aimed to identify priority domains for end-of-life care. Content analysis of semi-structured interviews among AYAs aged 12-39 years with advanced cancer, caregivers, and clinicians was used to evaluate transcripts. Coded excerpts were reviewed to identify themes related to normalcy. RESULTS: Participants included 23 AYAs with advanced cancer, 28 caregivers, and 29 clinicians. Participants identified five domains of normalcy including relationships, activities, career/school, milestones, and appearance. AYAs and caregivers identified that clinicians facilitate normalcy through exploration of these domains with AYAs, allowing flexibility in care plans, identification of short-term and long-term goals across normalcy domains, and recognizing losses of normalcy that occur during cancer care. CONCLUSIONS: AYAs with cancer experience multiple threats to normalcy during advanced cancer care. Clinicians can attend to normalcy and improve AYA quality of life by acknowledging these losses through ongoing discussions on how best to support domains of normalcy and by reinforcing AYA identities beyond a cancer diagnosis.