Association between physician age and patterns of end-of-life care among older Americans.

BACKGROUND: End-of-life (EOL) care patterns may differ by physician age given differences in how physicians are trained or changes associated with aging. We sought to compare patterns of EOL care delivered to older Americans according to physician age. METHODS: We conducted a cross-sectional study of a 20% sample of Medicare fee-for-service beneficiaries aged ≥66 years who died in 2016-2019 (n = 487,293). We attributed beneficiaries to the physician who had >50% of primary care visits during the last 6 months of life. We compared beneficiary-level outcomes by physician age (<40, 40-49, 50-59, or ≥60) in two areas: (1) advance care planning (ACP) and palliative care; and (2) high-intensity care at the EOL. RESULTS: Beneficiaries attributed to younger physicians had slightly higher proportions of billed ACP (adjusted proportions, 17.1%, 16.1%, 15.5%, and 14.0% for physicians aged <40, 40-49, 50-59, and ≥60, respectively; p-for-trend adjusted for multiple comparisons <0.001) and palliative care counseling or hospice use in the last 180 days of life (64.5%, 63.6%, 61.9%, and 60.8%; p-for-trend <0.001). Similarly, physicians' younger age was associated with slightly lower proportions of emergency department visits (57.4%, 57.0%, 57.4%, and 58.1%; p-for-trend <0.001), hospital admissions (51.2%, 51.1%, 51.4%, and 52.1%; p-for-trend <0.001), intensive care unit admissions (27.8%, 27.9%, 28.2%, and 28.3%; p-for-trend = 0.03), or mechanical ventilation or cardiopulmonary resuscitation (14.2, 14.9%, 15.2%, and 15.3%; p-for-trend <0.001) in the last 30 days of life, and in-hospital death (20.2%, 20.6%, 21.3%, and 21.5%; p-for-trend <0.001). CONCLUSIONS: We found that differences in patterns of EOL care between beneficiaries cared for by younger and older physicians were small, and thus, not clinically meaningful. Future research is warranted to understand the factors that can influence patterns of EOL care provided by physicians, including initial and continuing medical education.

Bolstering Advance Care Planning Measurement Using Natural Language Processing.

Despite its growth as a clinical activity and research topic, the complex dynamic nature of advance care planning (ACP) has posed serious challenges for researchers hoping to quantitatively measure it. Methods for measurement have traditionally depended on lengthy manual chart abstractions or static documents (e.g., advance directive forms) even though completion of such documents is only one aspect of ACP. Natural language processing (NLP), in the form of an assisted electronic health record (EHR) review, is a technological advancement that may help researchers better measure ACP activity. In this article, we aim to show how NLP-assisted EHR review supports more accurate and robust measurement of ACP. We do so by presenting three example applications that illustrate how using NLP for this purpose supports (1) measurement in research, (2) detailed insights into ACP in quality improvement, and (3) identification of current limitations of ACP in clinical settings.

What Patients Facing Cancer and Caregivers Want From Communication in Times of Crisis: A Qualitative Study in the Early Months of the COVID-19 Pandemic.

BACKGROUND: Interpersonal communication is a cornerstone of patient-centered care. We aimed to identify what patients with cancer and caregivers may want from communication during a public health crisis. METHODS: We interviewed 15 patients (8 Veteran, 7 non-Veteran) and caregivers from regionally, racially, and ethnically diverse backgrounds across the US about serious illness care and quality of care during the COVID-19 pandemic Using an iterative, inductive and deductive process, 2 coders analyzed content associated with the code "Communication," which appeared 71 times, and identified 5 themes. RESULTS: Participants identified as White (10), Latino/a (3), Asian (1), and Black (1). (1) Help patients and caregivers prepare for care during crisis by communicating medical information directly and proactively. (2) Explain how a crisis might influence medical recommendations and impact on recovery from illness. (3) Use key messengers to improve communication between primary teams, patients, and caregivers. (4) Include caregivers and families in communication when they cannot be physically present. (5) Foster bidirectional communication with patients and families to engage them in shared decision-making during a vulnerable time. CONCLUSION: Communication is critical during a public health crisis yet overwhelmed clinicians may not be able to communicate effectively. Communicating with caregivers and family, transparent and timely communication, ensuring diverse providers are on the same page, and effective listening are known gaps even before the COVID-19 pandemic. Clinicians may need quick interventions, like education about goals of care, to remind them about what seriously ill patients and their caregivers want from communication and offer patient-centered care during crises.

Consequences of a Health System Not Knowing Which Patients Are Deceased.

This quality improvement study in a California health system investigates the proportion of active patients who were deceased but not noted as such in the electronic health record (EHR), as well as encounters after death.

Depression care quality among patients with solid tumor cancers detected to have depression in Veterans Health Administration primary care clinics.

Patients with cancer, especially advanced cancer, experience depression at high rates. We aimed to evaluate the quality of depression care received by patients with solid tumor cancer and advanced solid tumor cancer in Veterans Affairs (VA) primary care clinics. This is a retrospective cohort study of patients seen in 82 VA primary care clinics who newly screened positive for depression on the Patient Health Questionnaire (PHQ-2). Outcomes included timely follow-up within 84 or 180 days (3+ mental health specialty, 3+ psychotherapy, or 3+ primary care visits with depression diagnosis codes) and minimum treatment within 1 year (60+ days antidepressants prescribed, 4+ mental health specialty visits, or 3+ psychotherapy visits). 608,042 individuals were seen in VA primary care clinics during this period; 49,839 patients (8.2%) had solid tumor cancer and 9,278 (1.5%) had advanced or poor-prognosis solid tumor cancer. For 686 observations of patients with cancer and new depression, rates of appropriate follow-up were 22.3% within 84 days and 38.2% within 180 days. For 73 observations of patients with advanced or poor-prognosis cancer and new depression, rates of appropriate follow-up were 21.9% within 84 days and 34.3% within 180 days. Rates of minimum treatment within 1 year were 68.4% and 64.4% for patients with cancer and patients with advanced or poor-prognosis cancer, respectively. Quality of timely depression management is low in patients with solid tumor cancers. Even in health systems with well-integrated mental health services, care gaps remain for patients with cancer and depression. (PsycInfo Database Record (c) 2023 APA, all rights reserved).

Association between physicians' geriatric training and patterns of end-of-life care delivered to persons with dementia.

BACKGROUND: Geriatric training is designed to prepare physicians to meet the complex needs of older adults, including persons with dementia at the end-of-life (EOL) stage. We sought to compare patterns of EOL care delivered to persons with dementia between physicians with versus without geriatric training. METHODS: We conducted a cross-sectional study of a 20% random sample of fee-for-service Medicare beneficiaries with dementia who died in 2016-2018 (n = 99,631). We attributed beneficiaries to a physician who had the largest number of primary care visits during the last 6 months of life and determined whether the physician was trained in geriatrics. Our outcome measures included: (i) advance care planning (ACP) and palliative care (e.g., ACP, hospice enrollment in the last 90 days of life), and (ii) high-intensity EOL care (e.g., emergency department visits or hospital admissions in the last 30 days of life). RESULTS: Beneficiaries with dementia under the care of physicians with geriatric training had a higher proportion of ACP (adjusted proportion, 15.8% vs. 13.0%; p < 0.001 after accounting for multiple comparisons), palliative care counseling (22.4% vs. 20.9%; p = 0.01), and hospice enrollment (63.7% vs. 60.6%; p < 0.001). Geriatric training was also associated with a lower proportion of emergency department visits (55.1% vs. 59.1%; p < 0.001), hospital admissions (48.8% vs. 52.3%; p < 0.001), ICU admissions (24.9% vs. 27.4%; p < 0.001), use of mechanical ventilation (11.2% vs. 13.0%; p < 0.001), and use of cardiopulmonary resuscitation (2.1% vs. 2.4%; p = 0.03) in the last 30 days of life. There was no evidence that the placement of feeding tubes differed between the two groups. CONCLUSIONS: Physicians' geriatric training was associated with the receipt of more ACP and palliative care and less intensive EOL care among persons with dementia. Provision of geriatric training for physicians may have the potential to improve the quality of EOL care delivered to persons with dementia.

Timing and setting of billed advance care planning among Medicare decedents in 2017-2019.

BACKGROUND: The Centers for Medicare & Medicaid Services (CMS) began to reimburse clinicians for advance care planning (ACP) discussions, effective January 1, 2016. We sought to characterize the timing and setting of first-billed ACP discussions among Medicare decedents to inform future research on ACP billing codes. METHODS: Using a random 20% sample of Medicare fee-for-service beneficiaries aged 66 years and older who died in 2017-2019, we described the timing (relative to death) and setting (inpatient, nursing home, office, or outpatient with or without Medicare Annual Wellness Visit [AWV], home or community, or elsewhere) of the first-billed ACP discussion for each beneficiary. RESULTS: Our study included 695,985 decedents (mean [SD] years of age, 83.2 [8.8]; 54.2% female); the proportion of decedents who had at least one billed ACP discussion increased from 9.7% in 2017 to 21.9% in 2019. We found that the proportion of first-billed ACP discussions held during the last month of life decreased from 37.0% in 2017 to 26.2% in 2019, while the proportion of first-billed ACP discussions held more than 12 months before death increased from 11.1% in 2017 to 35.2% in 2019. We also found that the proportion of first-billed ACP discussions held in the office or outpatient setting along with AWV increased over time (from 10.7% in 2017 to 14.1% in 2019), while the proportion held in the inpatient setting decreased (from 41.7% in 2017 to 38.0% in 2019). CONCLUSIONS: We found that with increasing exposure to the CMS policy change, uptake of the ACP billing code has increased; first-billed ACP discussions are occurring sooner before the end-of-life stage and are more likely to occur with AWV. Future studies should evaluate changes in ACP practice patterns, rather than only an increasing uptake in ACP billing codes, following the policy implementation.

Dementia and electronic health record phenotypes: a scoping review of available phenotypes and opportunities for future research.

OBJECTIVE: We performed a scoping review of algorithms using electronic health record (EHR) data to identify patients with Alzheimer's disease and related dementias (ADRD), to advance their use in research and clinical care. MATERIALS AND METHODS: Starting with a previous scoping review of EHR phenotypes, we performed a cumulative update (April 2020 through March 1, 2023) using Pubmed, PheKB, and expert review with exclusive focus on ADRD identification. We included algorithms using EHR data alone or in combination with non-EHR data and characterized whether they identified patients at high risk of or with a current diagnosis of ADRD. RESULTS: For our cumulative focused update, we reviewed 271 titles meeting our search criteria, 49 abstracts, and 26 full text papers. We identified 8 articles from the original systematic review, 8 from our new search, and 4 recommended by an expert. We identified 20 papers describing 19 unique EHR phenotypes for ADRD: 7 algorithms identifying patients with diagnosed dementia and 12 algorithms identifying patients at high risk of dementia that prioritize sensitivity over specificity. Reference standards range from only using other EHR data to in-person cognitive screening. CONCLUSION: A variety of EHR-based phenotypes are available for use in identifying populations with or at high-risk of developing ADRD. This review provides comparative detail to aid in choosing the best algorithm for research, clinical care, and population health projects based on the use case and available data. Future research may further improve the design and use of algorithms by considering EHR data provenance.

Implementation Challenges for a Multisite Advance Care Planning Pragmatic Trial: Lessons Learned.

BACKGROUND/PROBLEM: Advance care planning (ACP) pragmatic trials are needed. PROPOSED SOLUTION: We determined key system-level activities to implement ACP interventions for a cluster-randomized pragmatic trial. We identified patients with serious illness from 50 primary care clinics across three University of California health systems using a validated algorithm. If patients lacked documented ACP within the last 3 years, they were eligible for an intervention: (Arm 1) an advance directive (AD); (Arm 2) AD + PREPAREforYourCare.org; (Arm 3) AD + PREPARE + lay health navigator outreach. Triggered by an appointment, we mailed and sent interventions through automated electronic health record (EHR) messaging. We collaborated with patients/caregivers, clinicians, payors, and national/health system leader advisors. We are currently finalizing 24 months follow-up data. OUTCOMES/METHODS: We used the Consolidated Framework for Implementation Research (CFIR) and Reach, Effectiveness, Adoption, Implementation, and Maintenance (RE-AIM) frameworks to track secular trends and implementation efforts. KEY MESSAGE/RESULTS: Required multisite, system-level activities: 1) obtaining leadership, legal/privacy, and EHR approvals; 2) standardizing ACP documentation; 3) providing clinician education; 3) validating an automated serious illness identification algorithm; 4) standardizing ACP messaging with input from over 100 key advisors; 5) monitoring secular trends (e.g., COVID); and 6) standardizing ACP workflows (e.g., scanned ADs). Of 8707 patients with serious illness, 6883 were eligible for an intervention. Across all arms, 99% received the mailed intervention, 78.3% had an active patient portal (64.2% opened intervention), and 90.5% of arm three patients (n = 2243) received navigator outreach. LESSONS LEARNED: Implementing a multisite health system-wide ACP program and pragmatic trial, with automated EHR-based cohort identification and intervention delivery, requires a high level of multidisciplinary key advisor engagement, standardization, and monitoring. These activities provide guidance for the implementation of other large-scale, population-based ACP efforts.

Support for Use of Consumer Assessment of Healthcare Providers and Systems Communication Items Among Seriously Ill Patients.

Background: High-quality doctor-patient communication is essential for patients with serious illnesses. The reliability and validity of Consumer Assessment of Healthcare Providers and Systems (CAHPS®) communication items among these patients are unknown. Methods: Five CAHPS communication items, a 4-item Advance Care Planning (ACP) engagement scale, 5-item confidence in others' knowledge of ACP medical wishes scale, and a question about confidence in filling out ACP-related medical forms were administered to 1100 patients (20% response rate) with serious illness receiving primary care at three University of California Health Systems. Results: Average age was 69 (range 22-102); 52% male, 18% Hispanic, 9% Asian, and 7% Black; 24% had high school or less education. Eigenvalues and internal consistency reliability (0.88) supported a 5-item communication scale. Item characteristic curves showed a monotonic relationship of response options with the communication score. Item thresholds indicated that most patients reported positive patient experiences (i.e., items were negatively skewed). Item slopes ranging from 2.52 to 5.10 confirmed that all items were strongly related to the communication score. Information (reliability) of the communication scale was higher for assessing patients with negative experiences of care than for the positive end of the spectrum. Communication was positively correlated with confidence in other's knowledge of ACP medical wishes (r = 0.32, p < 0.0001), ACP engagement (r = 0.14, p < 0.0001), and confidence in filling out ACP-related medical forms (r = 0.09, p = 0.0022). Conclusions: These findings support the use of CAHPS survey items to assess communication among patients with serious illnesses in primary care. Clinical Trial Registration: https://clinicaltrials.gov/ct2/show/NCT04012749.

Integrating Patient and Expert Perspectives to Conceptualize High-Quality Palliative Cancer Care for Symptoms in the US Veterans Health Administration: A Qualitative Study.

Quality measurement is typically the domain of clinical experts and health system leaders; patient/caregiver perspectives are rarely solicited. We aimed to describe and integrate clinician and patient/caregiver conceptualizations of high-quality palliative symptom care for patients receiving care for advanced cancer within the US Veterans Health Administration in the context of existing quality measures. We conducted a secondary qualitative analysis of transcripts from prioritization discussions of process quality measures relevant to cancer palliative care. These discussions occurred during 2 modified RAND-UCLA appropriateness panels: a panel of 10 palliative care clinical expert stakeholders (7 physicians, 2 nurses, 1 social worker) and a panel of 9 patients/caregivers with cancer experience. Discussions were recorded, transcribed, and independently double-coded using an a priori logical framework. Content analysis was used to identify subthemes within codes and axial coding was used to identify crosscutting themes. Patients/caregivers and clinical experts contributed important perspectives to 3 crosscutting themes. First, proactive elicitation of symptoms is critical. Patients/caregivers especially emphasized importance of comprehensive and proactive screening and assessment, especially for pain and mental health. Second, screening and assessment alone is not enough; information elicited from patients must inform care. Measuring screening/assessment and management care processes separately has important limitations. Lastly, high-quality symptom management can be broadly defined if it is patient-centered; high-quality care takes an individualized approach and might include non-medical or non-pharmacological symptom management. Integrating the perspectives of clinical experts and patients/caregivers is critical for health systems to consider as they design and implement quality measures for palliative cancer care.

Telephone Outreach Enhances Recruitment of Underrepresented Seriously Ill Patients for an Advance Care Planning Pragmatic Trial.

BACKGROUND: Patients experiencing systemic patterns of disadvantage, such as racial/ethnic minorities and those with limited English proficiency, are underrepresented in research. This is particularly true for large pragmatic trials of potentially sensitive research topics, such as advance care planning (ACP). It is unclear how phone outreach may affect research participation by underrepresented individuals. OBJECTIVE: To assess the effect of phone outreach, in addition to standard mail survey recruitment, in a population-based ACP pragmatic trial at three academic health systems in California. DESIGN: Retrospective cohort study PATIENTS: Primary care patients with serious illness were mailed a survey in their preferred language. Patients who did not initially respond by mail received up to three reminder phone calls with the option of survey completion by phone. MAIN MEASURES: Effect of phone outreach on survey response rate associated with respondent demographic characteristics (e.g., Social Vulnerability Index [SVI], range 0 (low) to 1 (high)). RESULTS: Across the health systems, 5998 seriously ill patients were mailed surveys. We obtained completed surveys from 1215 patients (20% response rate); 787 (65%) responded after mail alone and 428 (35%) participated only after phone outreach. Patients recruited after phone outreach compared to mail alone were more socially vulnerable (SVI 0.41 v 0.35, P < 0.001), were more likely to report being a racial/ethnic minority (35% v 28%, P = 0.006), and non-English speaking (16% v 10%, P = 0.005). Age and gender did not differ significantly. The inclusion of phone outreach resulted in a sample that better represented the baseline population than mail alone in racial/ethnic minority (28% mail alone, 30% including phone outreach, 36% baseline population), non-English language preference (10%, 12%, 15%, respectively), and SVI (0.35, 0.37, 0.38, respectively). CONCLUSIONS: Phone outreach for a population-based survey in a pragmatic trial concerning a potentially sensitive topic significantly enhanced recruitment of underrepresented seriously ill patients.

Patient-Reported Quality Measures for Palliative Care: The Time is now.

CONTEXT: While progress has been made in the ability to measure the quality of hospice and specialty palliative care, there are notable gaps. A recent analysis conducted by Center for Medicare and Medicaid Services (CMS) revealed a paucity of patient-reported measures, particularly in palliative care domains such as symptom management and communication. OBJECTIVES: The research team, consisting of quality measure and survey developers, psychometricians, and palliative care clinicians, used established state-of-the art methods for developing and testing patient-reported measures. METHODS: We applied a patient-centered, patient-engaged approach throughout the development and testing process. This sequential process included 1) an information gathering phase; 2) a pre-testing phase; 3) a testing phase; and 4) an endorsement phase. RESULTS: To fill quality measure gaps identified during the information gathering phase, we selected two draft measures ("Feeling Heard and Understood" and "Receiving Desired Help for Pain") for testing with patients receiving palliative care in clinic-based settings. In the pre-testing phase, we used an iterative process of cognitive interviews to refine draft items and corresponding response options for the proposed measures. The alpha pilot test supported establishment of protocols for the national beta field test. Measures met conventional criteria for reliability, had strong face and construct validity, and there was diversity in program level scores. The measures received National Quality Forum (NQF) endorsement. CONCLUSION: These measures highlight the key role of patient voices in palliative care and fill a much-needed gap for patient-reported experience measures in our field.

Surgeon-reported Factors Influencing Adoption of Quality Standards for Goal-concordant Care in Patients With Advanced Cancer: A Qualitative Study.

OBJECTIVE: This study explored surgical oncologists' perspectives on factors influencing adoption of quality standards in patients with advanced cancer. BACKGROUND: The American College of Surgeons Geriatric Surgery Verification Program includes communication standards designed to facilitate goal-concordant care, yet little is known about how surgeons believe these standards align with clinical practice. METHODS: Semistructured video-based interviews were conducted from November 2020 to January 2021 with academic surgical oncologists purposively sampled based on demographics, region, palliative care certification, and years in practice. Interviews addressed: (1) adherence to standards documenting care preferences for life-sustaining treatment, surrogate decision-maker, and goals of surgery; and (2) factors influencing their adoption into practice. Interviews were audio-recorded, transcribed, qualitatively analyzed, and conducted until thematic saturation was reached. RESULTS: Twenty-six surgeons participated (57.7% male, 8.5 mean years in practice, 19.2% palliative care board-certified). Surgeons reported low adherence to documenting care preferences and surrogate decision-maker and high adherence to discussing, but not documenting, goals of surgery. Participants held conflicting views about the relevance of care preferences to preoperative conversations and surrogate decision-maker documentation by the surgeon and questioned the direct connection between documentation of quality standards and higher value patient care. Key themes regarding factors influencing adoption of quality standards included organizational culture, workflow, and multidisciplinary collaboration. CONCLUSIONS: Although surgeons routinely discuss goals of surgery, documentation is inconsistent; care preferences and surrogate decision-makers are rarely discussed or documented. Adherence to these standards would be facilitated by multidisciplinary collaboration, institutional standardization, and evidence linking standards to higher value care.

The 3 Wishes Program Improves Families' Experience of Emotional and Spiritual Support at the End of Life.

BACKGROUND: The end-of-life (EOL) experience in the intensive care unit (ICU) is emotionally challenging, and there are opportunities for improvement. The 3 Wishes Program (3WP) promotes the dignity of dying patients and their families by eliciting and implementing wishes at the EOL. AIM: To assess whether the 3WP is associated with improved ratings of EOL care. PROGRAM DESCRIPTION: In the 3WP, clinicians elicit and fulfill simple wishes for dying patients and their families. SETTING: 2-hospital academic healthcare system. PARTICIPANTS: Dying patients in the ICU and their families. PROGRAM EVALUATION: A modified Bereaved Family Survey (BFS), a validated tool for measuring EOL care quality, was completed by families of ICU decedents approximately 3 months after death. We compared patients whose care involved the 3WP to those who did not using three BFS-derived measures: Respectful Care and Communication (5 questions), Emotional and Spiritual Support (3 questions), and the BFS-Performance Measure (BFS-PM, a single-item global measure of care). RESULTS: Of 314 completed surveys, 117 were for patients whose care included the 3WP. Bereaved families of 3WP patients rated the Emotional and Spiritual Support factor significantly higher (7.5 vs. 6.0, p = 0.003, adjusted p = 0.001) than those who did not receive the 3WP. The Respectful Care and Communication factor and BFS-PM were no different between groups. DISCUSSION: The 3WP is a low-cost intervention that may be a feasible strategy for improving the EOL experience.

A pragmatic parallel arm randomized-controlled trial of a multi-pronged electronic health record-based clinical decision support tool protocol to reduce low-value antipsychotic prescriptions among older adults with Alzheimer's and related dementias.

Among patients with Alzheimer's disease and its related dementias (ADRD) with behavioral disturbances, antipsychotic prescriptions have limited efficacy and increase the risk of death. Yet, physicians continue to routinely prescribe low-value antipsychotic medications for behavioral disturbances among patients with ADRD. We designed a pragmatic randomized-controlled trial to measure the impact of a behavioral economic electronic health record (EHR) clinical decision support (CDS) intervention to reduce physician prescriptions of new antipsychotic medications among patients with ADRD. Utilizing a pragmatic parallel arm randomized-controlled trial design, the study will randomize eligible physicians from a large academic health system to either receive a EHR CDS intervention or not (control) when they prescribe a new antipsychotic medication during visits with patients with ADRD. The intervention will include three components: 1) alerts prescribers that antipsychotic prescriptions increase mortality risk (motivating physicians' intrinsic desire for non-malfeasance); 2) offers non-pharmacological behavioral resources for caregivers; 3) auto-defaults the prescription to contain the lowest dose and number of pill-days (n = 30) without refills if the prescriber does not cancel the order (appealing to default bias). Over 1 year, we will compare the cumulative total of new antipsychotic pill-days prescribed (primary outcome) by physicians in the intervention group versus in the control group. The study protocol meets international SPIRIT guidelines. Behavioral economics, or the study of human behavior as a function of more than rational incentives, considering a whole host of cognitive and social psychological preferences, tendencies, and biases, is increasingly recognized as an important conceptual framework to improve physician behavior. This pragmatic trial is among the first to combine two distinct behavioral economic principles, a desire for non-malfeasance and default bias, to improve physician prescribing patterns for patients with ADRD. We anticipate this trial will substantially advance understanding of how behavioral-economic informed EHR CDS tools can potentially reduce harmful, low-value care among patients with ADRD.

Seriously Ill Patients' Prioritized Goals and Their Clinicians' Perceptions of Those Goals.

CONTEXT: Seriously ill patients whose prioritized healthcare goals are understood by their clinicians are likely better positioned to receive goal-concordant care. OBJECTIVES: 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. METHODS: 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. RESULTS: 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. CONCLUSION: 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.

The chosen and the unchosen: How eligibility for liver transplant influences the lived experiences of patients with advanced liver disease.

Advanced liver disease is often uncurable and fatal. Liver transplant is the only curative option for patients with advanced, irreversible liver disease, but the need for new livers far exceeds the supply. Patients with the greatest need as well as the greatest likelihood of benefit, based on a complex array of biomedical and psychosocial considerations, are prioritized for transplant. The opportunity to receive a life-saving surgery no doubt has enormous consequences for patients and their healthcare providers, as does the absence of that opportunity. But these consequences are poorly characterized, especially for patients deemed poor candidates for liver transplant. Through in-depth interviews with patients living with advanced liver disease and the providers who care for them, we explore how eligibility status affects illness experiences, including patients' interactions with clinicians, knowledge about their disease, expectations for the future, and efforts to come to terms with a life-limiting illness. We describe how the clinical and social requirements needed to secure eligibility for liver transplant lend themselves to a clinical and cultural logic that delineates "worthy" and "unworthy" patients. We describe how providers and candidates discuss the possibility of moral redemption for such patients through transplant surgeries, a discourse notably absent among patients not eligible for transplant.